Thursday, August 22, 2019

Comments by J. Doe

Showing 57 of 57 comments.

  • Just FYI:

    You say, “Protracted Acute Withdrawal Syndrome (PAWS)”

    PAWS = POST-Acute Withdrawal Syndrome

    Protracted and acute do not occur simultaneously. These terms indicate time sequence in which withdrawal occurs. Acute is the immediate timeframe post-withdrawal and protracted is often defined as the withdrawal that persists for 18 months and longer (years).

  • Also, this “lack of education” explanation might fly for a primary care doc, but it’s no excuse for a psychiatrist. That is literally WHY there are specialities in medicine, so doctors can become more proficient in one system and the drugs used in that speciality. I’d expect my cardiologist to know a hell of a lot more about my heart than my orthopedist. Besides, all psychiatrists know how to do is Rx psych meds. So, they should know that benzodiazepines cause prescribed physical dependence (when given past 2-4 weeks, and sometimes even sooner) and withdrawal syndromes. And they should certainly also know how to get people off the drugs they prescribe. But they don’t (with the rare exception, of course).

    It reminds me of those memes: “You had ONE job” (and still managed to f*ck it up)

  • “I also believe that many people (but not all) who go on benzodiazepines know they are physically addictive (just as many people who drink alcohol heavily know that it’s physically addictive), yet are willing to take the risk anyway. I don’t know the explanation for this,”

    I know one explanation. Bc calling it “addiction” or saying “people know they’re addictive” is the wrong terminology. I knew they were addictive, but I also knew I wasn’t abusing them, so falsely took comfort in that that was the only way they could cause me issues. I had no idea that taking them exactly as prescribed, daily by my psychiatrist, was actually putting me at THE MOST risk for physical dependence and a subsequent withdrawal syndrome.

    You hear iatrogenically-ill benzo patients in the withdrawal support communities all the time saying, “my doctor told me they were addictive but said I would be safe taking them because I didn’t have an addictive personality”. See: http://w-bad.org/wp-content/uploads/2017/04/addiction.jpg

    More ignorance which ultimately leads to harm; specifically patient harm. Part of providing the patient with TRULY informed consent is letting them know of this risk that occurs IN ABSENCE of addiction/abuse, simply by way of being a compliant patient.

    Physical dependence and addiction are not synonymous. See: http://w-bad.org/wp-content/uploads/2017/04/druginsrt-addictionvdependence.jpg

  • You need a diagnosis in most countries to get disability – that’s just common sense. If you are rendered disabled from prescribed BZs or wd and need income – you might have to apply for disability to survive. It would be nice to get diagnosed with what you actually have – neurological illness, a prescribed physical dependence, withdrawal, neurotoxicity, brain damage, protracted withdrawal, etc. Instead, the medical community refuses, most of the time, to recognize this for what it is (and they don’t really have any existing diagnoses codes to diagnose it with anyhow that are accurate). No one is calling for people to get diagnosed as mentally ill, that’s exactly opposite of what this writing says.

  • Richard…

    This song was really touching. One of my “benzo buddies” you mentioned cried when she heard it. The song came at such an opportune time, too, as the benzodiazepine withdrawal support community is about to observe World Benzodiazepine Awareness Day on July 11th and then the MA “Benzo Bills” are scheduled for hearing later in July, as I’m sure you know. Thank you, also, for making space for the as prescribed victims of this class of drug – that’s so important and means so much. I can so relate to the girl in this song. It feels like she is me.

    I just love it, Richard! Keep being creative, you’re so good at it!

    My best, J Doe

  • Hey Richard-

    I just watched your testimony for the Bill in MA and wanted to pop on quickly and say that you did a great job – and thank you for the part where you accurately repped the ID community so well.

    I also have to add that after the testimonies, largely from truly ID people, I’m told – the news went ahead an printed and delivered video reporting about how this was an “abuse” and “addiction” problem. Sigh.

    I have to wonder why this keeps happening – and how much the attempts to garner support for this Bill by intermeshing it with the opiate crisis contributed to that. Part of me thinks- well, what did they expect to happen with that technique?

    I believe that enough of the ID community complained that the news outlet changed the wording in the text of the article about the hearing – but the video reporting still said “abuse” and “addict” in it, when I’m told that majority of the testimony was solely from ID victims.

    This is where I still believe that a strictly ID platform is hugely important for garnering understanding and proper support for that distinct condition. And I believe 100% that the ID only platform would still secondarily (by way of controlling the long-term Rx problem) benefit the abuse problem that occurs when people combine the drugs with opiates in abuse.

    Anyhow, just wanted to come back and give thanks for your support and testimony there. Good work and thank you for your support and understanding that you presented of the ID problem. You did a good job.

    Respectfully, J. Doe

  • FG- Good to “see” you weighing in here. Every time you’ve joined the discussion on this topic, I find myself nodding my head in agreement. I agree with Richard – I hope you’ll write your story (maybe even here on MIA?) . The part about your alcohol use being driven by the chemical imbalance that was created in your body by the drugs is crucial information to present. I think of it as very similar to how people with iron deficiency anemia develop “pica” and, secondary to the imbalance in iron, start chewing ice, clay, soil or paper.

    I have interacted with many others with a similar story – one woman who refers to it as her “benzo induced alcoholism” (she has since stopped drinking, after she got educated, and is near done with her benzo taper and is doing quite well). Knowledge is power and someone might see themselves in your story.

    In solidarity, J. Doe

  • Richard,

    RE: how to bold and italics in comments:

    Basic html is accepted by the comment form. Use for italics and for bold.

    So, drop the word you want in italics or bold in between either of the above listed codes.

    For example, if you want the word “benzo” bolded in your comments, you’d do:

    benzo

    ^^But, with NO SPACES (I just put spaces in the example above so you can see how to type it out. Had I left out the spaces in the above example, it would’ve just bolded it when I posted the comment and you could then no longer see the format on how to do it).

    It would be the same concept for italics, just with “i’s” instead of “b’s”.

  • I think part of the problem is that I feel that Richard mistook my Part 2 as a call to action for people who truly ID as addicts to stop calling themselves addicts, but what’s important to clear up is that the entire article was focused on ID only and coming from the perspective of a truly ID only person (me) and the “call to action” was to the ID-only community. In other words, it was asking that we, the ID community, start using the right language to describe what really happened to us and stop perpetuating the problem by using the same addiction language that has been used for years to blame the ID patient. Lots of people say “I was addicted” when the true story is one of ID only. I was in no way telling people who identify as addicts or who have an addiction-history to stop calling themselves that.

    I also don’t agree with the definition of the term addiction (and don’t agree either with the AA dogma, the “your disease is out in the parking lot doing pushups” stuff, or that addiction is a “disease” whatsoever), but I had to use it because it was a quote for how the medical community defines that term, and so as to differentiate between the two (ID and addiction). So, I was simply using it to make a distinction that it’s NOT the same as ID- and that in fact ID exists as a separate phenomenon seen and defined in other parts of medicine with other drugs that don’t typically have any “addiction” behaviors associated with them- i.e. beta-blockers.

    As for the quote about “as if they brought it on themselves,” I explained prior that I didn’t mean to perpetuate stigma (and even clearly stated in my article that nothing in the article was meant to be an attack, “put down,” or moral judgment to addicts at all). What I meant – and feel was misinterpreted – was that people do treat addicts that way and so, ID people don’t want to be subjected to that same stigma when our situation is very different from addiction, which is what has happened to many of us, simply because of the misdiagnosis and confusion around this topic.

    As for the great “benzo divide”, I’ve been in the community for over 5 years and like Yvonne and FG and others commented, I’ve yet to see or experience this “divide”.

    Lastly, as for the tone to the comments section that Richard keeps bringing up – I think it’s an impassioned discussion. Those of us in the ID community have been intermixed with or misdiagnosed with having addiction for so long that when someone comes along and does it again (injects addiction the discussion) to us when we’re (through horrific suffering) trying to forge a platform for ourselves just as ID alone for advocacy and education, it sucks – and sort of re-opens that wound of trauma that most/many in the ID community have all experienced.

    As I said before, i don’t deny the grey areas (although, I think some are just pseudoaddiction misdiagnosed as addiction- which I actually had a part about in the unedited version of my article, but my editor thought it should be removed due to length and the fact that I hadn’t brought that term up anywhere else in the article prior) exist – I just wrote the article solely about ID (and used addiction as the definition for what ID is NOT) and from that perspective and didn’t delve into the “grey areas”- not to deny or reject them- I just didn’t see them relevant to the ID only advocacy and platform.

    Also, this is type conversation- there is no inflection in text. I also, personally, just learned how to use the italics and other features- so before when I wanted to lay emphasis on words they were caps locked- which I know some interpret as shouting.

    I am still, also, very unwell and cognitively impaired and experience a lot of frustration in these types of interactions. Sometimes I see very long responses or complicated, very complex points being discussed and I have a hard time engaging and defending my points b/c my brain and nervous system are still very much damaged by the neurotoxicity. So, that’s something to keep in mind as well – that you’re dialoguing with very sick people. That’s not your fault – and was part of the reason I even considered not posting the articles until I was better so that I could better engage – but ultimately I felt the topic too important (and I, myself, too passionate about change around it) not to bring it to completion and put it out there.

    Best to all who have participated here.

  • Thank you so much, Katie, for your comment. All I can say is thank goodness that nurses like you exist and how lucky for any patients who received your care from such a well-informed place and perspective.

    I have pondered for quite some time a way for what you describe in your comment to come to fruition- treating the benzo ID patient like an actual patient with a legit medical problem- it is just physiological dependence (an expected outcome) and neurotoxicity after all. I have tossed around the idea in my head of perhaps some kind of a “network” of sorts or an advocacy effort strictly for medical professionals (nurses, doctors, PAs, NPs, etc) to join as members to show support for and do advocacy around (i.e. with the DEA or the state Boards of medicine) the mission of exposing and making universal humane protocols around benzo ID. Some of them, like yourself, know the truth about what’s really going on. It’s just sadly not enough. (I think at one point there was a group like this in Maine, I’m not sure whatever happened to them or if they closed down. And in the UK, after reading Barry Haslam’s comments it seems like the BMA *might* be coming around in the UK…we’ll see)

    Thank you again! In solidarity, J. Doe

  • Sorry, put this in the wrong place (hard to find where to reply to someone when the thread is long).

    BPD-

    I wish it were just a one-off anecdote. There are many, many stories of people in the iatrogenic dependence and withdrawal communities who share similar experiences. Benzos are quite often prescribed for “ailments” outside the realm of psychiatry.

    I guess what I’d ask you to do when making statements like you did about taking responsibility and examining the reasons you agreed to take them is to ask yourself if you’d ever say that same thing to someone who’s tendons ruptured from taking fluoroquinolone antibiotics? Or is that type of thing only reserved for people who took stigmatized psych drugs? Just food for thought.

    I agree with your final assessment that people need to more closely examine what they’re being given/what they’re taking- but for many of us, that is a lesson learned the hard way (trust me, I got the lesson). Yet another argument for allowing the solely iatrogenically dependent community to have a unique platform separate from addiction/the “grey areas” so that people don’t have to learn this themselves and can learn from those of us that have already made the mistake for them. We can’t reach them though if they don’t believe or know they’re at risk b/c we’re not allowed a platform that isn’t convoluted with addiction to say “Hey, look! This happened to me and it can happen to you even if you take the drug as directed from your doctor.”

  • BPD-

    I wish it were just a one-off anecdote. There are many, many stories of people in the iatrogenic dependence and withdrawal communities who share similar experiences. Benzos are quite often prescribed for “ailments” outside the realm of psychiatry.

    I guess what I’d ask you to do when making statements like you did about taking responsibility and examining the reasons you agreed to take them is to ask yourself if you’d ever say that same thing to someone who’s tendons ruptured from taking fluoroquinolone antibiotics? Or is that type of thing only reserved for people who took stigmatized psych drugs? Just food for thought.

    I agree with your final assessment that people need to more closely examine what they’re being given/what they’re taking- but for many of us, that is a lesson learned the hard way (trust me, I got the lesson). Yet another argument for allowing the solely iatrogenically dependent community to have a unique platform separate from addiction/the “grey areas” so that people don’t have to learn this themselves and can learn from those of us that have already made the mistake for them. We can’t reach them though if they don’t believe or know they’re at risk b/c we’re not allowed a platform that isn’t convoluted with addiction to say “Hey, look! This happened to me and it can happen to you even if you take the drug as directed from your doctor.”

  • Sure. BPD-

    I’ll ask the woman in my support group who took prescribed Ativan for tongue pain caused by menopause to examine what her unconscious reasons were for taking the pills and how she can better take responsibility for what happened to her. How about because she had tongue pain and her doctor told her to take them and that they would help? In many cases, it’s really that simple and not that deep.

    As for me being “black and white”- my article was solely from the perspective of a truly iatrogenically dependent person. It wasn’t about examining the “grey areas” and all the possible outcomes that can occur with taking benzos, and so I didn’t touch on them b/c that wasn’t the topic. Do I realize the “grey areas” exist? Of course- that is obvious. I defined “addiction” in my article to show that it is the wrong word to use when someone is truly iatrogenically dependent, not because I think there’s only iatrogenic physical dependence and addiction and nothing in between.

    People who fall solely into this category (of which I and countless others do) of iatrogenic physical dependence should be allowed a platform for advocacy and to tell/write about their unique experiences involving language and how their experience has been misunderstood/disbelieved without being expected to examine all possibilities and/or outcomes that can happen when that’s not the topic of the discussion at hand or the focus of their advocacy. And when they don’t examine the “grey areas” or wish to distance from the improper use of addiction terminology to describe a completely different circumstance, they shouldn’t be accused of ignoring the “grey areas” b/c of moral superiority or outright denying or rejecting that the other experiences exist.

  • What is unfair, Richard, is that you took my effort at carving out space and seeking validation for and education around an oppressed, misunderstood, underrepresented, misaccused population of benzo users to which I belong (the iatrogenically dependent) and twisted my attempt at pointing out the problems with terminology (b/c I did not delve into the “grey areas” due to the article not being about that- and due to the fact it was already too long) into a denial, rejection, invalidation, and moral distancing from addicts/addiction.

    What has occurred here is similar to (just as an example), say, black women attempting to carve out space for themselves and for their unique issues for which they do advocacy work around being black women in particular that all women don’t experience. And then a white man, who hasn’t experienced even being a woman at all, let alone a black one, stepping in and attempting to define their experience for them, while also telling them how to advocate for themselves as just women b/c it’s “better for the overall cause of women’s issues” to which they belong simply by way of being women. And when they point out that they believe some issues they experience need unique representation outside of the issues of the whole (women’s issues in general) or need to be specially highlighted so they’re better understood and attention brought to them, they’re accused of rejecting/discriminating against/denying/being non-inclusive of the experiences of all other races of women’s issues.

  • Your conclusion is correct, uprising. Thank you. I didn’t cover the “grey areas” b/c the article was meant to be strictly about iatrogenic benzo dependence and it’s overall lack of recognition and it being completely misunderstood/mismanaged/misdiagnosed. And no, I never denied their existence nor did I intend to “distance” in the moral sense- only in the terminology sense which causes confusion and perpetuates further harms for the truly iatrogenically dependent population.

  • “Why can’t we just state the truth that these drugs are not safe outside of a hospital setting (with possible rare exceptions) and should not be prescribed to anyone, addiction problem or not. And if they have addiction issues it will all become even worse, if not deadly.”

    Because some people’s livelihoods, professional licenses, reputations, family/friend relationships, whether or not they receive support during their withdrawal, their ability to get approved for SSDI, their ability to be continually prescribed the benzo needed for a taper depends on making a CLEAR distinction and proving the case that iatrogenic physical dependence exists, is real, and is what happened to them.

  • Going to add one more point and then I’m done on this topic.

    In your numbered list, numbers 1-4:
    “1.People who have had no history or connection to substance abuse or addiction
    2. People who have had a prior history of substance abuse and are in a current state of abstinence
    3. People currently abusing or misusing other mind altering or addictive substances, including opiates
    4. People whose iatrogenic dependence on benzos was a contributing factor to them evolving into abuse patterns with other substances such as alcohol, or a relapse back into addiction with a past “drug of choice,”

    All of the above, in my opinion, can still constitute iatrogenic dependence. It’s irrelevant if people have a past/current history of addiction/abuse of drugs if they are not abusing their benzo currently and they took them as directed by their doctor. It would be the same – iatrogenic dependence- if they were alcoholics (past or active) but were taking an SSRI/antipsychotic daily as directed that caused dependence and withdrawal syndrome which was completely independent of their addiction to/abuse of alcohol.

    I belong to a psychiatric drug dependence/withdrawal support group for ALL psych meds (not just benzos) with a diverse group of people w/ many different histories and experiences. There is one member who comes to mind who has a self-professed very long history of addiction with anything he could get his hands on. He has since been sober for many years. Once sober, he was prescribed and took SSRIs, under his doctor’s direction that it would “help” him with maintaining sobriety, which caused iatrogenic physical dependence. And now, since tapering for many years, he suffers from a severe withdrawal syndrome from the SSRI which he describes as being far worse, totally different, and persisting for much longer than his drugs of abuse.

    When discussing his issues, his being an addict is always referred to by him as a completely different problem than his prescribed SSRI dependence and withdrawal.

    Just the other day in my support group, this very topic arose surrounding an article about Luke Montagu’s wife. For history, Luke Montagu recently won a lawsuit against his prescribing doctor (for what was clearly iatrogenic dependence/medically mismanaged withdrawal) for millions of dollars. The article was titled “Julie Montagu on her husband’s addiction to prescription drugs”. ( http://www.dailymail.co.uk/home/you/article-3470982/Julie-Montagu-talks-husband-Luke-s-addiction-prescription-drugs.html )

    My recovering addict friend (who is also an iatrogenically dependent SSRI victim), who I discussed above, (who has always thought it was perhaps a bit ‘petty’ to ‘knit pick’ the language) in response to the article’s title stated, “Ok. I’ve never chimed in on the whole addiction word as before I thought everyone was making a big deal out of just language but in this headline it sounds really bad and just poor context”.

    Someone else then responded to him, saying: “Separate struggle. Separate language. Absolutely ridiculous and dangerous”.

    My recovering addict friend closed with saying: “I’m beginning to understand”.

    Another example of a similar situation would be Stevie Nicks and her iatrogenic Klonopin dependence. She was a cocaine addict in recovery when she was prescribed Klonopin to supposedly “help” her remain sober. She took the Klonopin as directed by her psychiatrist for many years which made her very ill. The two (her addiction and her iatrogenic dependence) were separate and distinct issues.

    She, too, would, despite her prior history of addiction, fall into the iatrogenic dependence category. And yet they still use the word “addiction” in this article (http://www.benzo.org.uk/nicks.htm) to explain her experience in spite of her very clearly describing iatrogenic dependence: “Basically, I went to see a doctor just to check in with somebody and let everybody know that I was OK. I guess when most people go off Klonopin they have a very hard time. I wasn’t one of those people, but he didn’t know that. So he suggested that I go on this drug for my nerves, and I just said OK to get everybody to leave me alone. Well, what a big mistake. I really wonder where I would be now, what I would have done if those eight years were full of creativity and love, and good things instead of full of nothing.”

    She also very clearly describes that she never went back on cocaine- and so it IS possible for people to be iatrogenically dependent on benzos/psych meds, and not get thrown back into active addiction w their prior “drug of choice”.

    I think when myself and other people advocating for the iatrogenically dependent benzo platform are saying it’s important to “distance from addiction” – we don’t mean not speaking to, shunning, denying their experience, or disallowing addicts/people w/ histories of addiction to other substances and/or benzos in our groups. Instead what we’re meaning is when referring to cases that are specifically iatrogenic dependence cases, distancing from (and really altogether avoiding using) the incorrect use of addiction terminology/the addiction narrative to describe a completely different and distinct phenomenon that is iatrogenic physical dependence (as was done in the articles previously listed- Luke’s wife/Stevie Nicks – which both incorrectly used addiction language to describe what was, in both cases, iatrogenic dependence).

    Thank you for this discussion Richard. Best to you and all. – J.Doe

  • On a similar note, should all the advocates who are coming forward and telling their iatrogenic dependence/withdrawal/neurotoxicity stories about prescribed “anti”depressant use gone bad (in order to warn other unsuspecting victims about these overly prescribed drugs) be expected to highlight and advocate for the fact that some people are now choosing to inject Wellbutrin as “the poor man’s cocaine”? http://globalnews.ca/news/846576/antidepressant-wellbutrin-becomes-poor-mans-cocaine-on-toronto-streets/

    Or can we see and recognize that expectation would be silly and that while it’s the same drug- the circumstances are completely different and the iatrogenically dependent platform is unique and separate in it’s efforts and cause?

  • Richard,

    You think my argument falls short- I feel that you are naive in your desires to “bridge the divide”, and are missing the point. Perhaps this is because, quite luckily, you’ve never had to experience what myself and so many other iatrogenic benzo victims have had to endure- and so maybe it’s not that you don’t get it, but rather that you just are unable to b/c you haven’t personally lived or experienced it.

    I will try to explain (keep in mind- on a very uneven playing field- you with full use of your cognitive abilities, and me extremely cognitively impaired w neurotoxicity, which has made this dialogue so difficult all along, despite the desire. It is extremely frustrating to want to debate or to have so much back and forth when you can barely use your brain effectively) where I think you miss the point.

    1. Everyone already (for the most part- and incorrectly) equates benzodiazepine use with addiction. So, that problem is already recognized. What we’re trying to do here is not deny the experiences of people who fall into that category (or even the iatrogenic and then subsequently addicted category) or discriminate or stigmatize, but instead we are attempting to make a case and develop a platform for a very unique and barely recognized group of benzo users- the solely iatrogenically dependent. I resent what feels like you’re attempting to twist my words and trying to imply that I was somehow stating that they don’t need understanding or support- or that by not mentioning the “grey areas” that I was denying they exist or rejecting them outright, which is not the case.

    2. Because everyone already equates benzo use with addiction, there are unfair and misdirected consequences (some of them quite severe) for people who are just iatrogenically dependent and we feel this iatrogenic dependence alone (separate from addiction/the “grey areas”) needs recognized so that the people who fall ONLY in the iatrogenically dependent category aren’t harmed twice. There are REAL harms from getting this wrong (it’s not just semantics) and legitimate reasons why there is a desire to distance the iatrogenic dependence cause from addiction to avoid the harms from persisting.

    For example, consider you’re an attorney (or any other professional holding a license) and your doctor prescribes you Xanax for “stress at work”. You take it as directed, you become dependent unknowingly thinking you’re just taking “medicine” and being a “complaint patient” and then when you try to stop, you get severe withdrawal. This impacts your ability to function and work, your doctor equates benzos/withdrawal with addiction, you’re reported to your licensing board and they take away your license to practice, pinning you an “addict” and ordering you to AA/NA meetings/rehab and/or whatever other addiction interventions they see necessary (like 5 years of monitoring or drug tests). All of this because you took a drug your doctor prescribed, told you to take, and because the world at large misunderstands (including the medical profession) the differences b/w addiction and iatrogenic dependence.

    Another example, you’re a single mother recently divorced. You haven’t been sleeping well, so your doctor puts you on a benzo at bedtime. When you decide to stop taking it, you get sick and start to struggle to care for your kids, or you develop psychiatric symptoms which your ex-husband becomes aware of. He then takes you to court for custody and argues you’re an “addict” and wins custody over your children as you’re deemed an “addict” and unsafe to be a parent. Your doctor cuts you off b/c your ex-husband calls him and informs him that you’re abusing the drugs (you didn’t, but he assumed you did, b/c everyone thinks when you get withdrawal and try to go back in to get reinstated to make the suffering stop and to taper appropriately- you’re suddenly “drug seeking”). Now to get your kids back you have to prove that you’re “clean and sober”, but you needs to keep taking the benzo in order to stop the severe withdrawal and in order to taper. Now you’re also stuck trying to find a benzo-cooperative MD (there aren’t many) who understands the differences b/w iatrogenic dependence and addiction who will prescribe and allow you to taper slowly. Until you’ve personally had to scramble (in severe withdrawal, I might add, suicidal, desperate, and debilitated, getting worse and worse) all over your state- and for some people across states- looking for an MD to prescribe for you who “gets it”, and are rejected over and over again b/c iatrogenically dependent people are constantly lumped in with the people who abuse these drugs, I’m not sure you can understand.

    A third example – you are looking for an attorney to represent you in litigation case against your doctor who harmed you iatrogenically with benzos without informed consent. In this case, you MUST make a separate and distinct case for IATROGENIC DEPENDENCE ALONE because any misunderstanding or misdiagnosis of abuse/addiction relieves the doctor you’re suing of responsibility and places the blame on the patient. It is impossible to get compensation for the neurotoxicity and damage without being separately defined as the unique phenomenon that it is.

    How can you not see that there’s a NEED for a unique and distinct platform for iatrogenically dependent people b/c it is it’s own problem, and that by talking about it as it’s own problem doesn’t require me (or anyone else) to have to address ALL the problems that may result from benzos at the same time? And that by advocating for that distinct platform that we don’t have to somehow be discriminating against or rejecting addicts or the “grey areas” that may exist?

    This has gone on now for 50+ years without recognition or change and perhaps it’s because the iatrogenic problem has been lumped in for all this time with addiction and that terminology has been used incorrectly to describe this problem, so instead of the blame being placed on the prescribers/drug cos and the dangerous drug itself, it’s misdirected at the patients who can just be accused of abusing the drugs, so the problem lies with them (the users) and not the drugs at all…and the problem persists. By trying to continually “bridge the divide”, I feel your efforts feel more invalidating to the iatrogenically dependent group, as opposed to recognizing the addicts and the people in the “grey areas”. In other words, by trying to continually lump us all together (when we’re actively trying to distance ourselves for good reason), it doesn’t feel anything like unity, but instead feels more like erasure – erasure of the experience of the distinct phenomenon that many have lived solely as iatrogenic dependence and without addiction or the “grey area” as part of their experience.

    At the end of the day, iatrogenically dependent people aren’t dismissing that addiction to/abuse of benzos exists or that it can be deadly when they’re abused (esp in combination w opiates), nor are we dismissing that people can start out iatrogenically dependent and become addicts- of course those are true. Although, I think MANY cases that fall in this “grey area” might just be “pseudoaddiction” (which is still just iatrogenic dependence) misdiagnosed as addiction b/c the tolerance and interdose withdrawal to benzos is so debilitating and painful that many people are driven by the suffering to updose some (take a bit more than directed) in order to function and relieve the intolerable suffering due to being underdosed (again, something you have to experience to truly appreciate the severity and why/how that happens). However, if the tolerance/dependence/interdose withdrawal (all phenomenons of iatrogenic physical dependence that we are attempting to expose and hoping to bring education around) were recognized as such by medical professionals, these patients would stop taking more than directed if they were simply updosed to an adequate amount of drug to stop the tolerance withdrawal and would then not qualify as “addicts” at all.

    With all of that recognized, some of the advocacy of the iatrogenic benzo community would simultaneously nd secondarily benefit the addiction problem – as I believe most of us desire stricter regulations of the prescribing of these drugs (or at the least adherence to the 2-4 week prescribing protocol) so that there aren’t anymore innocent iatrogenic victims in the future. In a perfect world, they’d be removed from use totally except in the hospital setting for things like seizures (and other than measures for them to still be prescribed to people who are already dependent iatrogenically and need the drug access to taper). If the stricter regulations came to pass or they were removed from the market (save the reasons for use mentioned above), it would probably then, too, have a direct impact on the addiction problem that currently exists.

    Also, as I stated in my article- if you don’t expose the iatrogenic dependence problem as distinct and separate, many people aren’t going to know they’re at risk. People will hear addiction and (wrongly) think they’re “safe” b/c they were prescribed by their doctor and that so long as they don’t abuse them, they will be OK. And nothing could be further from the truth.

    I also don’t think that I should be required or it be demanded of me (or anyone else in a highly compromised state b/c of neurotoxicity to these drugs, who is just fighting for recognition and change around what happened to them) to advocate for and discuss every single outcome that can happen with benzo use. My personal passion is solely for the iatrogenic dependence problem b/c that is my story. I am not an addict and never have been and don’t think I can (or should be asked to) accurately speak for or about an issue or problem that I’ve never had and that I don’t relate to b/c it is not my experience. Why should we be expected to lump ourselves in with it or do advocacy for it when our efforts are better directed at what we did experience and what we feel is completely misunderstood (still) because it hasn’t been recognized as the distinct phenomenon that it is?

    Lastly, I’ll re-post an example I put elsewhere on the same topic, in the event you missed it, that I believe drives my point home:

    I have tried to think of a scenario or analogy that would be clearer or better explain the point. This is what I came up with: Say there was a household cleaning product that was approved as “safe” for humans to use by the EPA (or whoever approves these products). People began using the product in accordance with the instructions for use listed on the product and became gravely ill. Another group of people were inhaling the product in an attempt to get high from it.

    All of the families and individuals who were just cleaning their house with it (as it was intended to be used) came forward attempting to highlight for the public that this product had made them sick just from normal household use. The public then responded (b/c of all of the news around the abuse of it and no understanding publically that it is dangerous, too, when used as directed) accusing them of only getting sick because they were inhaling it like the other group. Or someone then asked them why in their advocacy around household use they aren’t also advocating for help for the people who are inhaling it? In their efforts, all they want is to have a platform to warn and educate others about the dangers of this product when used as directed in the home so that innocent people know they are at risk.

    When they’re (falsely) grouped in with the people inhaling it or the waters are muddied and the clear distinction between the two groups not made, the general public writes them off and doesn’t think they’re at risk using the product themselves b/c the public perception is that it’s only a problem b/c people were inhaling/abusing it. The activism failed. The as-directed household users can still have compassion for the addicts who need help with their addiction to and behavior of misusing the product (and recognize that behavior exists) without taking that on as their activism work, as it is a completely different issue and one which they most likely don’t relate to, as they weren’t inhaling the product themselves. They want the world informed to the dangers of using it as most people do, as it was intended for use, and to know it’s NOT even safe to use that way.

    Also, because the people (who are attempting to expose approved use of the household cleaner as dangerous) are misunderstood and falsely grouped with those who abused the cleaner, they can’t obtain appropriate medical help from their doctors/the medical community in being treated for the illness it caused. How frustrating and scary that is to be dismissed at every turn when you’re gravely ill- that is what we as iatrogenic benzo victims have experienced similarly and want to elicit change around with our distinct platform- and we feel we can’t do it if we don’t separate ourselves from attempts at “bridging the benzo divide” and being further and continually misdiagnosed and misunderstood as being addicts.

  • Frank,

    Here is where the dialogue is going off track, as I see it. You say, “On the other hand, physiological dependence is my definition of addiction. If addiction isn’t physiological dependence, what is it?”

    These are two different issues with some overlap- physiological/physical dependence occurs in addiction- but it can also occur completely independently of addiction (i.e. beta blockers, corticosteroids, SSRIs to name a few- all points discussed in the articles). Also, while addiction as a diagnosis can be used to pathologize, dependence is just an expected physiological consequence/outcome of taking a drug long-term (and in benzos, longer-term than recommended).

    You may have your own definition of what you *think* or want to believe they are- but the fact is they are distinguishable (hence our including of the definitions and examples of the differences between the two).

  • In order to reach the medical community, we have to use their language to attempt to explain what’s happened to us as a start, whether we like it or agree with it or think it sums up our condition accurately or not. It’s a start. It doesn’t mean we endorse or totally agree with the provided definition of addiction that is supplied along side the definition of dependence by the medical community. It just means that we’re attempting to reach them using their own diagnoses and terms to attempt to get their understanding around what happened to us so that we can garner recognition and change around a problem that’s been permitted to persist for over 50 years and has claimed and maimed countless lives. If we were to just randomly invent our own language/terms that we felt more accurately describes our condition in lieu of using the currently accepted medical terms/rejecting them altogether, I’m not sure it would be recognized at all. We have to start with what medicine recognizes and go from there. There are efforts in our community to give this syndrome a name and to get away from addiction/dependence altogether, but the efforts must be recognized as legitimate by medicine if they are to affect change in the long run.

  • *I should also add that because the people (who are attempting to expose approved use of the househould cleaner as dangerous) are misunderstood and falsely grouped with those who abused the cleaner, they can’t obtain appropriate medical help from their doctors/the medical community in being treated for the illness it caused. How frustrating and scary that would be to be dismissed at every turn when you’re gravely ill- that is what we as iatrogenic benzo victims have experienced similarly.

  • Hey lily.c,

    Thank you for your comment.

    This same issue keeps coming up and I can’t really understand why, but I want to try to address it with commentary in one last ditch effort. It is frustrating for those of us looking to build a platform with the intention of gaining more understanding and action around iatrogenic benzo dependence to be repeatedly asked why we don’t focus on helping people suffering from all kinds of dependencies and addictions for a few reasons:

    1. It feels a bit invalidating and like we’re not being heard or the information isn’t being read, whether that is anyone’s intention or the truth or not. I’m not sure anyone who was personally affected by, say, breast cancer and who was trying to bring awareness to that specific form of cancer would ever have to justify why they weren’t out garnering support for leukemia or brain cancer too.

    2. We don’t relate at all and have no experience with addiction, as iatrogenic dependence is a completely different phenomenon. So why should we be expected to lump ourselves in with it or do advocacy for it when our efforts are better directed at what we did experience. Also, many of us are gravely ill and it takes all we have energy and effort wise to just manage what we do- taking on more causes would be impossible for many. I do, personally, advocate for dependencies to all psych meds, as I was a polydrug victim, and because the withdrawal and neurotoxicity is so similar they can be lumped together.

    3. There is so much misunderstanding and misinformation around iatrogenic benzo dependence alone that it needs to be separated and have it’s own platform so that it’s better understood and treated appropriately- and so that it stops happening.

    4. Being (falsely) grouped in with addiction has harmed our cause and resulted in more misunderstanding and mistreatment, so we’re forced to make a clear distinction in our activism around this topic. We don’t agree with the stigma around addiction, but also don’t want to be wrongly subjected to it, especially when our situation is uniquely different.

    Lastly, I have tried to think of a scenario or analogy that would be clearer or better explain the point. This is what I came up with. Say there was a household cleaning product that was approved as “safe” for humans to use by the EPA (or whoever approves these products). People began using the product in accordance with the instructions for use listed on the product and became gravely ill. Another group of people were inhaling the product in an attempt to get high from it. All of the families and individuals who were just cleaning their house with it as it was intended to be used came forward attempting to highlight for the public that this product had made them sick just from normal household use. The public then responded accusing them of only getting sick because they were inhaling it like the other group or asked them why they aren’t advocating for help for the people who are inhaling it when all they want is to have a platform to warn and educate others about the dangers of this product when used as directed in the home so that innocent people know they’re at risk. When they’re (falsely) grouped in with the people inhaling it, the general public writes them off and doesn’t think they’re at risk using the product anymore- the activism failed. They can still have compassion for the addicts who need help with their addiction to and behavior of misusing the product without taking that on as their activism work, as it is a completely different issue and one which they most likely don’t relate to.

    Do you see the point I’m making with that example? I hope it offered some kind of clarity around it.

    Thank you again, lily.c, for your comment and best to you and all who commented here. J.Doe

  • Frank,

    I’m not sure where to even begin in responding to this one as there is so much wrong w your comment.

    Do you honestly believe that people obtaining drugs on the street illegally and abusing them- taking them in large quantities and to get high- aren’t aware that they are doing something dangerous? And that there’s no difference there between people who are prescribed them and who take them as directed, and who are duped into thinking they are “medicine” and “safe” and “needed for your condition” as a “treatment”? That the people who took them as prescribed and innocently, thinking they were helping themselves by being a compliant patient, aren’t in a completely different situation in regards to not requiring help/intervention with their cravings or behavior, but rather just in finding a safe way off of the drugs (through taper) once they discover that they’re ill from the tolerance that has developed physiologically in their body from taking them past the recommended 2-4 week time period? How can they do a safe taper if every medical provider who needs to be prescribing the drugs for a safe discontinuation thinks they are drug-seeking addicts when that is not true?

    I assure you no one is in denial. I have been free from the benzo drugs and no longer dependent for over 3 years as has Ally, the creator of this video and accompanying article. In fact, I personally was the one to discover what was wrong with me (tolerance and dependence to benzos after being prescribed them well past the recommended 2-4 week guidelines) after countless doctors and specialists failed to diagnose the drugs as the cause of my decline and illness. And the instant I knew what was causing my sickness, I did something about it and began the process of undoing the damage that was done to me.

    This is not about being snobby, it’s about being accurate. Your assumptions here just further shows how much more work there is to be done in regards to awareness around this issue, as people like yourself completely miss the point. Did you even read the articles? People need to know that even if they take these drugs (presented as “medicines” by the their doctors) that they are at risk.

    Lastly, we didn’t write the definition for addiction (or any of the other definitions presented). They were written by a committee composed of many different medical associations (listed in both the article and video). Whether we agree with their definition of addiction or not (I personally think it’s off base) doesn’t mean that we can change the content of a quote in presenting what medicine believes addiction to be.

    The language is not just a matter of semantics or of “being a snob”, there are real and dangerous implications for flubbing the terminology.

    J. Doe

  • Boans,

    You state:
    “I watched my brother go through something for many years that was ugly. He was given benzos to treat “Agorophobia”. Your articles have completely changed my thinking about what I observed.”

    This is a huge part of the reason why I wrote these two articles- in hopes that family members and friends (and maybe even, hopefully, a few medical providers) of iatrogenic benzo sufferers could better understand us and what exactly happened to us.

    I, personally, was very misunderstood and it was incredibly painful, not to mention scary, when I was in such a severe state of cold-turkey withdrawal to where I could not effectively advocate for myself. Instead of helping me or believing me or realizing how serious this was, I was treated poorly (due to lack of education on everyone’s part) and my health and life were put at risk.

    If these articles served to help you better understand what your brother went through, I am satisfied that they served their purpose- if only even to just help one person. So, thank you.

    I plan to be persistent and quite loud with my voice on this topic, you got that right!

    All the best, J. Doe

  • Hi, Nan. And whew! So glad to hear your inner feeling allowed you to escape ignorant and dangerous advice that could’ve turned out to be a very long and painful “journey” (it’s more like a long ride through hell). Congratulations on freeing yourself as well from the SSRI with the help of nutrition and functional medicine. Have a wonderful Thanksgiving yourself and thank you for your comments. -J.Doe

  • Oldhead,
    Actually, I just did a word-find of the entire piece, and the word “medication” was used only in quoted excerpts–with one exception (in the DSM section, under the chart on substance-induced disorders: “These include withdrawal as well as intoxication and other substance/medication-induced “mental disorders” (e.g., sleep disorders, neurocognitive disorders, sexual dysfunction, anxiety disorder, or depressive disorder).”

    That one use of the word is language that carried over from the DSM itself in an attempt to explain how the DSM classifies people w/ iatrogenic benzo dependence.

  • Oldhead,

    I know in your last comment you admitted you hadn’t even really read part I and part II and were just popping in to comment, so I’m just curious to know if your comments stem from having read both pieces in their entirety, as the articles explain in great detail why the terminology isn’t not just a matter of semantics.

    To my knowledge, no one is using the term medications, except perhaps in the comments or in quotes to imply they’re not *really* medications but are presented that way by the medical community to patients when they’re prescribed to imply they’re “treating” something or that the patients are helping themselves in some way by taking them. If by chance it showed up in the article itself, it was most likely an oversight in the editing process. There was no purposeful intention to use that word in an attempt to avoid any stigma around the word drug.

    I didn’t see Richard’s views being dismissed as someone who doesn’t “get it”, although he admittedly has never been through it, so I’d go so far as to say he can never truly “get it” to the extent someone who has lived it would. He was certainly challenged on some of his comments and given very good (in my opinion) feedback as to why his thoughts are a separate issue (that he’s already made his own entire blog post about, yet brought over to this article on an entirely different subject) and seemed to detract from the very specific point of this particular article itself in an attempt to take it in a whole other direction that the people in the iatrogenic benzo community aren’t really willing to take on/and wish to distance ourselves from for the reasons stated in the article and also in the comments by FG specifically.

  • Agreed. Hopefully more advocacy efforts crop up around this point, spatler. However, without us gaining a platform for the terms that better describe this condition *and* formal recognition/widespread use of those terms as diagnoses in the medical community in regards to the iatrogenic benzo issue, we might just be preaching to the choir. For now, dependence is all that’s defined and formally recognized, so there’s work to be done. I believe that’s why this issue is so important to be highlighted and advocated for.

  • drt,

    Thank you for your kind comments.

    I didn’t have cravings either. I think some people confuse interdose withdrawal (that develops when the benzo victim hits tolerance- especially, but not limited to, the shorter half-life drugs) where the drug dose is no longer efficacious in “covering” the emerging symptoms of tolerance withdrawal for as long a period of time as it was when initially taken, and the person then experiences emerging withdrawal symptoms in between scheduled doses.

    I never had a feeling of pleasure either- quite the contrary. It has been misery and chasing my tail since the few months after they were prescribed.

    I do think the joy and excitement in your life will return and the fact that your symptoms are lessening already is a small glimpse into what’s to come in time. The great frustration is the duration and not knowing, as well as, of course, being forced to endure the agonizing suffering in the interim while we wait on the hope that healing is coming because it did for others before us.

    Best to you and thank you again for your kind commentary, J. Doe

  • Richard,

    When I said “the hammer” I was referring to the proverb- “if all you have is a hammer, everything looks like a nail”. Meaning, if a person is familiar with a certain, single subject (in this case-addiction), or has with them a certain, single instrument, they may have a confirmation bias to believe that it is the answer to/involved in everything.

    As for the stigma “issue” you pointed out, I stand behind what I wrote and think the problem lies with your emotional interpretation as opposed to the meaning that I intended in the context in which I said it. Again, I was meaning that, while the stigma is unfortunate, iatrogenic benzodiazepine victims are being subject to it and that is one unfortunate element of using incorrect terminology here. I wasn’t calling for the stigma against addicts to continue or saying that it was OK. As I said before, I went out of my way to make that clear, as I knew ahead of time writing this that there would be at least one response that tried to twist this into something it’s not.

    I understand your intent in raising some of your concerns with the broader implications, but you did that in your own blog post and I feel like you’re trying to carry that over here to a topic where we are trying desperately to have our own platform for this one specific cause that desperately needs understanding and change so that people stop being harmed by the ignorance that currently surrounds iatrogenic benzo dependence alone. I don’t wish to intermix the two issues, as I feel they are better addressed separately and are completely different. FG’s comments on this issue in their 7:47 pm 11/21/15 comment are spot on as to why this needs to remain separate.

    I appreciate your support. Thank you.

  • John,

    There are warnings all over cigarette boxes and alcohol containers as well as TV commercials warning of their harms and dangers. I think it’s pretty well known by someone addicted to/abusing something regularly that they’re engaging in unhealthy choices and behaviors.

    That’s completely different than a doctor/medical provider handing you a prescription and telling you that this is “medication” that you “need” and to take it every day as he/she told you to – and you thinking and believing (and being reassured and backed up in those thoughts) that you’re helping yourself or doing something for your health (be it a physical problem, a so-called mental health problem, etc) because you’re following your doctors orders. Not to mention that some people not only aren’t warned about the risks/possible harms, but are instead told the benzos are “safe and effective” and “not addictive” by their prescriber as well.

    I see the parallel you’re trying to draw, but I think the above is an important distinction.

    Also, I don’t think making the distinction b/c addiction and dependence in the case of benzos is about being comfortable, so much as it is about educating people to the risks/potential harms when these meds are taken even as directed for longer than 2-4 weeks and hoping for change/a platform for change with the use of proper terminology around how the iatrogenic benzo victims are treated so that more harm is not done to them (due to misunderstandings from the use of improper terminology) which can cause much more suffering and even sometimes death.

  • “The same problem and symptoms occur with all psych drugs. They all cause CNS injury to receptor systems. It actually is not a withdrawal phenomena at all – it’s an injury and it can take years to heal.”

    Couldn’t agree more! Thanks for your commentary. I do know it happens w/ other psych meds as well but chose to focus on benzos specifically b/c I am a benzo victim (as well as polydrug as a result of the benzo tolerance/toxicity being misdiagnosed as so-called “mental illness) so it’s something I want to advocate for change around, but also because iatrogenically dependent benzo victims seem to be more likely to put in the “addict” box and refused repeat prescriptions of the drug to safely taper than, say, iatrogenically dependent SSRI victims. But you’re right- the way it all occurs is the very similar, save the receptors involved.

    I do hope that somehow there can be a platform for this garnering attention as a legitimate medical problem as opposed to being seen as “withdrawal” or “addiction”. It is injury/damage/neurotoxicity. I’ve met people (and personally experienced it myself) who, when withdrawn too quickly from benzos, developed dangerously high blood pressure, had seizures, abnormal heart rhythms, etc which can be real medical emergencies- it is so much more than “withdrawal”, I agree.

    Thank you for your comments.

  • oldhead, no one is pitting anyone against anyone else. I was very clear in an article (that was SPECIFIC to iatrogenic benzodiazepine dependence) that this was NOT about stigmatizing addicts.

    Part One of my article made this clear: “Appealing for the proper use of terminology here—“dependence” instead of “addiction”—is in no way calling for addicts to be stigmatized or treated poorly or for people who are made iatrogenically dependent to be treated superior. Instead, it’s calling for a clear distinction between the two terms that is already made (if not always understood or followed) in most respected specialties of medicine, ensuring that individuals who have iatrogenic physical dependence are treated appropriately.”

    I think what’s going on here is what FG pointed out in their comment above: “The problem I see is that people who identify as addicts tend to take the dependence/addiction distinction as a personal jab when it really isn’t about that. Just because one of the reasons I don’t want to be called an addict is because I don’t want to be stigmatized as an addict doesn’t mean that I condone the stigma or that I am looking down on someone who has addiction issues.”

    I’m not going to comment further on this issue, as I feel there is an agenda being played out here on this particular section of the comments which is detracting from what the topic of this particular article is about- specifically the problems around prescribed, taken as-directed iatrogenic benzodiazepine dependence and not the other issues/problems to include benzodiazepine abuse when used in conjunction with opiates.

    Best, J. Doe

  • Richard-

    1. Yes, psychiatry/the APA should also take some blame for the reasons you state. But, don’t forget that a lot of these drugs are also prescribed by PCPs and internists and non-psychiatric fields of medicine.

    2. If you read part I, which I believe you did, as you commented there as well, I was CLEAR that the stigma against addicts is not something I support or condone and that in making these distinctions, I was NOT trying to perpetuate the unfortunate stigma against addicts that exists, but rather to make a very clear distinction where benzodiazepine iatrogensis occurs. I agree with everything the first commenter, FG, said on this topic above in their comments to you and couldn’t have said it better myself.

    I also understand that addicts aren’t always treated well by the system and that’s unfortunate, but that’s not what this article was about. AND, I’d argue that addicts have FAR MORE support and resources available to them than the people who suffer from iatrogenic benzo dependence and find themselves with NOWHERE to turn b/c they’re either misdiagnosed or mismanaged at every corner b/c no one understands this or knows how to manage it appropriately.

    As for the part that you quoted me on, I was NOT implying that it’s OK to treat addicts poorly either. Again, we’re talking solely about iatrogenic benzo dependence in this article. And my point was only that it’s NOT OK to treat these victims of iatrogenic benzo dependence like they brought it upon themselves and deserve this (as many people do treat us that way) which is yet another reason that we need to separate ourselves from the behavior of addiction, as it is a completely different animal. As FG so eloquently stated above: “Just because one of the reasons I don’t want to be called an addict is because I don’t want to be stigmatized as an addict doesn’t mean that I condone the stigma or that I am looking down on someone who has addiction issues.”

    I understand your education, focus and work primarily revolves around addiction- but in this case, it’s beginning to feel like you’re the hammer (and everyone else the nail) that I spoke of in Part I. I think you’re comparing apples and oranges here, Richard. You’re mixing two COMPLETELY different topics together and attempting to muddy the waters which I don’t think is helpful at all.

    People who abuse pain meds and then toss in benzos (alcohol, other drugs, anything they can get their hands on) to make their high better (and then sometimes go on to become heroin addicts) have absolutely NOTHING to do with what this article is about- which is iatrogenic illness from AS PRESCRIBED benzodiazepine use. YES, we should wall off these issues b/c they are COMPLETELY DIFFERENT.

    Opiates are scheduled differently by the DEA b/c they have a very high risk of abuse/addiction. Iatrogenic benzo dependence patients typically don’t report cravings or a “high” and typically sit on their same dose until they’re in tolerance withdrawal (and have no idea what’s happening to themselves) as opposed to abusing them. Part of the reason we finally figure it out that it’s the drugs is b/c tolerance w/d kicks in from NOT increasing the dose over time. It’s not even close to the same thing or similar as to what’s happening in opiate addiction/abuse mixed with abused benzos, even if the person initially was started on opiates by an MD. One involves the behavior of abuse/addiction- the other does not.

    Go back and read some of the quotes from Ashton in Part I. Talk to some (and actually LISTEN) victims of iatrogenic benzodiazepine dependence/toxicity/neurotoxicity and hear what their stories are and how this happened to them and what it was like and I think you’ll see just how different a scenario this is.

    If you were a victim of this iatrogenic illness from as-prescribed use of benzos yourself, it would be VERY clear to you how different they are, as it is for all of us who are living it every day ourselves. (It’s not all that different from the prescribed SSRI dependence/withdrawal/neurotoxicity which doesn’t involve the behavior of abuse or addiction either).

  • In the case of iatrogenic benzodiazepine dependence/tolerance/withdrawal and protracted withdrawal/drug neurotoxicity – the victims who did not receive informed consent and are left in a horrific state of suffering, sometimes for years, are NOT happy- quite the contrary, actually, as the suffering can be indescribably bad (sometimes to the point where people become suicidal). They’re not always adults either- there are children in the withdrawal support groups who are suffering horribly as well (as their parents were not given informed consent about the outcomes of long-term use of these drugs on their children).

    As for your question on who gets to decide who is an addict, you might want to refer to the hyperlinked Part I of this article (at the very top of this article). The diagnostic criteria for determining addiction and definitions are spelled out there at length and in detail.

  • Hi Barry- Thank you for the kind message above. I have read many of your writings about your own story and watched your video (the one with you and your wife) and all were very hopeful and encouraging, which is exactly what myself and others who are tapering from the benzos or suffering from the longer-term drug neurotoxicity in a protracted manner need. Your work and dedication to the cause are much appreciated by the entire benzo community – so thank you very much.

    I understand what you’re saying to Brighid above, but am still confused on the logic behind insisting on using the word addiction (when this is clearly not addiction by definition).

    If the government in the UK is trying to write all of the benzo patients off as addicts and blame the patient in an attempt to dodge responsiblity (when this is clearly NOT addiction and a result of iatrogenic dependence/neurophysiological adaptation- as someone else pointed out in another comment/drug neurotoxicity), why then should we continue to refer to ourselves as having been made iatrogenically addicted?

    Doesn’t continuing to use the wrong terminology (addict/addicted) just further excuse what really happened and continue to put the blame on the patient? Not to mention the implications for people who are actually TREATED like addicts and CT’ed or ripped off the drug rapidly? (which was one of the major points I tried making in the article- that language/diagnosis dictates treatment and if we’d start using the right terminology, perhaps the proper treatment-slow taper, or avoiding long-term prescription of this stuff to begin with- for what the patients actually have-dependence/drug neurotoxicity- would hopefully be better understood/adhered to). Not to mention the social implications of being wrongly mistaken for/diagosed as addicts.

    Addiction means the behavior of abuse by definition. When you say “iatrogenic addiction” (or accidental addiction or prescribed addiction or any combo of those), you imply that you were initially prescribed them by a doctor and then lost control and began abusing them. That’s what addiction means by definition in the medical world. And that is not what occurred in the majority of the stories of people who experienced iatrogenic dependence from benzos as you well know. In fact, most people become tolerant b/c they DON’T increase the dose and just sit in withdrawal on the same dose b/c their doctor told them to keep taking that dose.

    I don’t think I’m telling you anything you don’t already know with your years of experience, I just think your choice of descriptive terms is inaccurate and may be perpetuating further ignorance and mistreatment surrounding this issue. Even the BNF uses the word “dependence” (as I hyperlinked in my article). No offense meant or implied, hopefully, in this discussion, as I do really respect you and all of your work and dedication to this cause.

    I get more into my thoughts on WHY the terminology is hugely important in our advocacy work in Part II (coming this week) of the article. I do hope you’ll read and perhaps take those things into consideration as you go forward advocating for us. Most of us do not want to be called addicts or addicted by our advocates and find it to be a very inaccurate descriptor as to what really happened to cause this damage (self-included).

    Again, much thanks for your comments, your encouragement, your amazing commitment to advocacy for this cause over the years, and for sharing your story with such transparency in hopes of eliciting change around this horrible human right’s violation. You have, no doubt, helped countless numbers of people.

    With gratitude, J. Doe

  • Hi BetterLife,

    I cringed a little hearing about what happened when you missed your Ativan dose only b/c I know what that felt like.

    For the doctors who think it’s “no big deal” and that patients should take this stuff for the rest of their lives, I think they should all have to have their own prolonged period of drugging/dependence/toxicity and see what kind of “life” (or lack thereof) that amounts to and how it actually feels. I think the same is true for the ones who try to negligently cold-turkey/rapidly taper patients. If they had to experience it themselves, I think they’d quickly change their tune and see just how difficult it is to get help/understanding from the medical profession that in most cases causes this.

    Hopefully you were able to safely rid yourself of the Daytrana and Ativan.

  • Ang,

    Lying to your doctor (or twisting the truth) to get the SSRI in order to taper or not be cold-turkeyed b/c they are ignorant to the dependence/withdrawal potential of these drugs or for your own health and survival is not the type of lying I think they’re talking about. I think they’re talking about things like doctor-shopping to get a large quantity of drugs to abuse and take more and more of that drug to get high. Typically, we don’t see people taking huge amounts and dosages of an SSRI for a “high”.

    Although, I have recently seen something where addicts are shooting up Wellbutrin when they’re out of their illicit drugs. This is addiction/abuse (and I don’t think it’s the same thing you’re describing, unless I’m not understanding you): http://globalnews.ca/news/846576/antidepressant-wellbutrin-becomes-poor-mans-cocaine-on-toronto-streets/

    And then doctors or psychiatrists demanding you take more psych drugs as a result of the complications from the SSRI being misdiagnosed as so-called “mental illness” requiring more drugs is not the “taking more and more of the drug” they’re talking about (think someone taking hundreds of milligrams of codeine in a day when they were only prescribed to take, say, 60mg per day for a short period of time, who then is buying them off the street and going to doctor after doctor lying about pain to obtain more and more to abuse in very high dosages).

    All of that that you describe is just iatrogenic physical dependence that is misunderstood and mistreated/medically mismanaged and so the patient is forced to lie or go from doctor to doctor desperately trying to find someone who believes them and to get the drug/SSRI they need in order to not get cut off and sent into a devastating state of CT so they can taper appropriately (but to still take the same prescribed dose they are dependent on). IMO, that is just smart and survival and getting other medical opinions and being your own health advocate.

    I agree, however, that the psych meds do destroy personalities and devastate lives in similar ways.

  • dolorfinis,

    Iatrogenic means: of or relating to illness caused by medical examination or treatment.

    And dependence refers to physical dependence which was defined in the article as: a state of adaptation that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.

    So, ultimately, in regards to benzos, we’re probably talking about the same thing except that iatrogenic just indicates that it’s a result of medical treatment. (Plysical dependence can happen in and be one component of addiction too since people are still exposing themselves to the drugs, but is not a result of medical treatment and also involves abuse and behaviors not seen in physical dependence alone).

  • Great comment, spatler. I totally see your point. For now, with what language we have to choose from, I guess I am ok with “physical/physiological dependence” as it describes the physiological changes that occur in the body when one is taking the drugs. It really is, though, as you describe, a down-regulation of the GABA receptors which seem to get “stuck” in that downregulated position after too long exposure to the benzo agent.

    What I believe (and touch on in part II) is that there most definitely needs to be a name and diagnosis for the SYNDROME that occurs when the people who experience this downregulation from use of the benzos STOP taking them (either in taper or too rapidly). And that maybe the name could give greater understanding and a platform for this condition that is so desperately needed.

    It is definitely damage (albeit reversible over time, temporary) and neurotoxicity and the changes that have occurred from taking the drugs for prolonged periods and is much different and much more debilitating, dangerous, and severe than most all other drugs (excluding other psych meds from what I’ve seen/heard from the, say, antidepressant communities). When I was in detox, the street drug users were playing basketball after a few days of being detoxed. My cold-turkey state was just getting started and the syndrome only beginning and continued to worsen as I remained in that state.

    “Withdrawal”, to me, is suitable, as well, to describe the time period when one is actually removing the drug in a taper, but doesn’t describe much else. If you are tapering, you are withdrawing the drug or perhaps “reducing”, too, would be suitable (as in reducing the dosage). But so many people, for lack of better descriptive terms surrounding this issue, continue to call the post-withdrawal syndrome or time period…withdrawal. “I am in withdrawal”. When really, as you state (and as Dr. Shipko was quoted in the article as stating), they/we are in a persistent state of neurotoxicity (or of having neuropsychiatric damage/toxicity) and damage that is not always reversible over a short time span. I am lucky enough (after desperately going through multiple uninformed practitioners) to have found a doctor that was open-minded and willing to learn, and she says to me all the time now (after getting educated): “This is a form of brain damage. You have brain damage”. As scary as that may sound to some, for me, it provided much validation and comfort that she understood it in that way.

    Thank you for your very insightful comments which made me ponder the topic even further. It is so important we bring awareness to this issue and come up with ideas and solutions together as victims of this, as there’s too much confusion and not enough understanding – and the people who are suffering as a result of it are the victims.

  • Alex,
    Thank you for your kind and supportive comment. Wow! How inspiring a story and good to hear that you finally did recover fully and escape the psychiatric drugging.

    Just curious: Without even knowing you had iatrogenic illness- how did you figure out to taper on your own? Just tried reducing too quickly to face withdrawal, only to get back on and try again until you figured it out…or?

  • All great points, Richard.

    I agree, i don’t think it’s enough to give someone a piece of paper (if it’s given at all) that says “benzos can cause dependence” and have them sign on the line and then prescribe them for years and years. And just telling people they cause dependence without a explanation as to what that really, truly MEANS is not really informed consent. People need to know in detail what dependence and withdrawal from benzos actually looks like (sometimes years of painful tapering and sometimes years of recovering from the neurotoxicity they cause) and how they can fully devastate your life BEFORE deciding if the benefits outweigh the risks for whatever they’re choosing to take them for. None of this happens. I’m not even sure the doctors know or believe it’s possible, to be honest. Or maybe they just don’t want to for financial gain as you mentioned, I don’t know. Stricter restrictions on them or just keeping them in hospitals and medical settings only and adhering to the short-term use guidelines would be the solution to all of this (and of course, in the meantime, allowing the people who are already dependent the time they need to safely taper off in the interim).

    It is definitely a crime against humanity and much more harm than good is being done w/ benzos. Too frequently we hear of suicides in the online withdrawal communities b/c of these drugs and their painful, persistent withdrawal syndromes because people feel hopeless that it will ever end and there’s seemingly nowhere to turn for help or support medically.

    Then there’s the fact that they actually CAUSE the very thing they’re often prescribed to treat (anxiety, panic- as well as more problems that weren’t there to begin with) after being prescribed too long. Who would take, say, a cancer drug if it’s just going to give you worse cancer in the end?

  • Hi uprising,

    I respect your thoughts on addiction not being a disease and feel similarly, personally. But I didn’t want to get into that in the article, as it really is another topic in itself. The medical model, however, does describe it as such and so I kept w/ the medical definitions in order to stay on track. I’ve seen other pieces posted here on MIA though that argue the same point about addiction and whether or not it’s a true disease, so it seems there’s certainly debate going on about that topic. What was important to me w/ this piece is making point that they (dependence/addiction) are, in fact, not the one in the same and the harms that occur to the patients when this confusion occurs.

    Thank you for sharing your experience in regards to iatrogenic benzo dependence and how you were treated by the medical community. It sounds all too familiar and, as you probably know, most of the stories in the withdrawal communities are much the same. I am deeply sorry that you experienced what you did.

  • Hi humanbeing-

    There are way too many of us, you are right. And everyday, it seems, new people show up. I am shocked (but not really b/c $$$) that the horror continues after fifty years without something being done to curtail the prevalence and devastation. But it feels like we’re still in the dark ages with the medical profession even refusing to believe in some cases that this is even possible or that the drugs caused it.

    Congratulations on completing your taper and 23 months of benzo freedom (although I appreciate it’s hard to call it “freedom” when you feel anything but free as the withdrawal persists for so long). Keep going- I will too. I believe healing will happen in time, as it has for so many before us.

    Best to you.

  • Hi The_cat,

    Thank you for your comments. Part II (to come soon) of this article addresses the first part of your comment about not knowing what addiction was and why the language is so important in reaching people who are probably dependent and unaware b/c they’re not addicted or abusing the drug (stay tuned…). I thought the same thing, FYI, and because I wasn’t addicted or abusing it, I falsely believed that the benzos were safe and why would my doctor prescribe something harmful to me, so the only people who must get harmed are the ones who don’t take it as they’re supposed to (wrong!).

    Addiction basically is the behavior of wanting to keep taking it no matter what. It’s the behavior of abuse of the drug (the more descriptive definitions are above in the article as to the differences).

    If you were prescribed it for insomnia and took it as directed by your doctor, you were made iatrogenically dependent without informed consent as to the potential for dependence and withdrawal syndrome.

    I, too, wound up in detox as my bio states b/c I figured out on my own what was happening after years of illness due to tolerance and toxicity and I wanted off this stuff, but had no idea of the tragic outcomes of cold-turkey or that I was supposed to taper. I was gravely harmed as a result (and am still suffering three years later as a result of that negligence). I agree there needs to be more clear warnings and informed consent from the medical professionals prescribing these and, most importantly, adherence to the 2-4 week prescribing guidelines. I also was falsely diagnosed as having so-called “mental illness” from the tolerance, toxicity and withdrawal the benzos caused.

    I am so sorry for what happened to you.

  • Hi Richard, Thank you for your comment. Thank you too for putting thought into care with language. As someone who has worked with people with addictions, it’s important that the addiction/rehab/detox community can discern between addiction and dependence so as not to misdiagnose, harm and further traumatize people who are merely iatrogenically physically dependent.

    I did read your last blog and while yes, *some* people are put on opiates and start to develop addictive behaviors and abuse the drugs and take other drugs (sometimes benzos, alcohol, etc) in combination with them looking for a “high” or go on to become heroin addicts, many people are compliant on opiate therapy as well (and probably suffer suspicion and mistreatment b/c of the abuse epidemic that has occurred w opiates, some in part to negligent prescribing).

    Remember, though, that Dr. Heather Ashton’s work was a clinic with 300+ people who came TO HER asking for her help to get off of these drugs that their doctors prescribed to them. This is the case for most everyone I’ve met in the online withdrawal community over the many years I’ve been active in it. The vast majority of those people are victims of iatrogenesis who took the drugs as directed for many years, sometimes becoming very ill from tolerance b/c they DID NOT increase their dose, but rather continued taking the prescribed amount, thinking it was “medicine” they “needed” b/c their medical provider told them to continue taking it. Most of the people desperately want off and are quite upset about the deception they feel that this was done to them without any informed consent. There are conservative housewives, elderly folks, educated professionals caught in this trap who have no history of abuse or addiction, who weren’t swallowing their Ambien, Xanax or Klonopin and washing it down with alcohol, getting them of the street, and taking them with opiates (other psych meds? yes. b/c often psychiatric misdiagnosis of the tolerance occurs) but instead thinking they are complaint patients “treating” something.

    I don’t think the majority of iatrogenic benzo dependence winds up like opiate dependence that results in addiction and sometimes heroin addiction (which is probably why most of the opiates that put people on that path are schedule II drugs and benzos are schedule III drugs). Instead, people just take the benzos compliantly sometimes for years and years and are oblivious as to what’s to come in regards to drug neurotoxicity and severe withdrawal.

  • Hi bpdtransformation,

    Thank you for your comment. I am glad that you were already aware (or made aware) of some of the possible outcomes from the longer-term use of benzos. Remember though, they don’t only have “addictive potential”, they also have dependence potential. I just point that out b/c appropriate language is the whole topic of the article. If you took “small doses” (there really is no “small dose” when it comes to benzos- I’ve met people in the withdrawal communities who became dependent in as little as a few weeks on the smallest available dose and who suffered just the same in severity and duration as people who were on them for 10 years at higher doses) for a short period of time, as directed by your doctor, you weren’t displaying any addictive behaviors and only then at risk for their dependence potential. Part II of the article (to come soon) gets more into this addictive potential vs. dependence potential business and why it’s important to use the right language in order to warn and provide informed consent (stay tuned!).

    To answer your question about anonymity, there are a number of reasons. Mainly, due to this iatrogenic benzo nightmare, and subsequent misdiagnosis of both addiction and so-called “mental illness”, I have lost a lot- my ability to work, friends, house, income, etc. I am remaining anonymous (for the time being) to be sure I can resume my career and present my case as to what happened to me from a place of full healing and having nothing that interferes w/ that process going smoothly, as it’s my only chance of getting back on my feet financially. Secondly, I am still suffering from the protracted neurotoxic effects the benzos had on my brain and nervous system and due to the nature of some of the symptoms that come with that (paranoia, mental confusion, cognitive issues, memory issues, etc) , I felt it was better for me to recover completely and make the decision to come forward without anonymity from a place of feeling safe and with full mental clarity and complete healing. I am not ashamed of this at all, and I don’t think anyone who is a victim of iatrogenic injury should be, and feel quite passionately about speaking out about this cause with many plans to in the future- the timing just isn’t right yet, as healing isn’t happening as quickly as I’ve been willing it to. I hope that answered your question.