UK Clarity Project -- "An End to the Hell of Sleeping Pill Addiction"

http://www.dewsburyreporter.co.uk/news/local/an-end-to-the-hell-of-sleeping-pill-addiction-1-7290308

 

http://www.northkirkleesccg.nhs.uk/news/more-get-help-to-kick-tablet-habit/

 

https://healthwatchkirklees.co.uk/news/local-health-project-shortlisted-for-prestigious-award/

 

http://www.examiner.co.uk/news/west-yorkshire-news/huddersfield-woman-able-sleep-without-9657399

 

Focus on z drugs and benzos.  The last article, from the Examiner, gives a personal account of a woman who was helped to get off zopiclone and some great details on the program.  Seems like a short taper though, compared to my 10 month odyssey!

 

Very interesting pilot project.  Would love to see this in British Columbia.

 

 

Ali

Hi SS,

While it's good to see this type of project and the positive results it has garnered, I'm distressed to see the free use of the words "addict" or "addiction" for those who have been prescribed these medications by their GPs. It's an iatrogenic dependence caused by the action of the medication on the central nervous system, i.e. GABA receptors in the brain. I object to it being described as something else when it's inappropriate to do so. It lets the doctors off the hook and skews the understanding of what has happened to these people.

 

Unfortunately, I've seen this type of lingo used a lot in the UK. While it's true that they're ahead of us in this game, they really need to adjust the language. SOON!

I know Lapis, baby steps.  But somehow I think if doctors made it clear that use of these drugs over a few weeks leads to addiction, it might hit home with those of us placed on these drugs initially.  Somehow, the term dependence just doesn't address the horrors of withdrawal - I find the term, while technically accurate, a bit weasle-wordy.

 

If I had been told that the z-drug I was placed on would lead to addiction, I would never have used it past a couple of weeks to get me through the worst of my severe insomnia.  Never.

 

And if I had been told that the z-drug I was placed on was considered, for all intents and purposes, to be a benzo by the WHO, I would never have used it past a couple of weeks either.

 

So, while I appreciate the distinction between dependence and addiction, and the fact that the two conditions should be approached very differently from a clinical standpoint, I do believe that the term "dependence" doesn't really hit home with most people.  Most people don't really have a clue what that means but it sounds sort of managable and a bit benign.  So far, far from my experience coming off.

 

The MOST help I received throughout this difficult (for me) journey was interestingly enough from Addictions Medicine.  The staff at Daytox were amazingly kind, knowledgable and supportive.  They knew about the horrors of benzo withdrawal, if not z-drug withdrawal.  They were open minded.  They believed me.  They provided much needed support, including acupuncture.  I was not pathologized in the process but treated with kindness and respect and they also applauded my resolve to get off the medication and were profoundly respectful of me.  My own GP was hesitant about my self-referral to the Daytox program as he thought I'd be in "with a rough crowd".  In truth, it was an overwhelmingly positive experience and I found the patient population there to be strangely uplifting.

 

OMG, I have gone on here!

 

 

Ali

Hi Ali,

I still have to object. If you look up the word "addiction", there are references to "cravings", "out of control use", "use despite consequences" and "compulsion to use", as seen here on the CAMH website:

 

http://www.camh.ca/en/hospital/health_information/a_z_mental_health_and_addiction_information/drug-use-addiction/Pages/addiction.aspx

 

These phrases do NOT describe the situation with those of us who took the medication as directed by our doctors. We did NOT know the consequences. "Addicts" require a different kind of approach since the reasons behind their behaviour can be quite complicated. "Iatrogenic dependence" is the appropriate term here for many of us, and whether it sounds "weasle-wordy" is irrelevant. These are technical terms that describe two different situations.

 

The word "addiction" carries with it many connotations, including sneakiness, illicit behaviour, drug-seeking behaviour, doctor-shopping, lying, etc.

 

"Iatrogenic" explains that the effects are caused by the medication or medical treatment.

 

The differences must be illuminated so that we don't all get painted with a black brush. I think it's imperative. People need to be educated and made to understand the truth.

Lapis,

 

I completely understand.  It is just that if someone had used the term "addiction" with me at the outset, I wouldn't be here.  I've never had any issues with addiction.  I would never have used the z-drug for longer than a few weeks had I known.

 

I get it.  Iatrogenic dependence is correct.  But for the average person in their doctor's office, I think it is too obtuse, too open to interpretation and forgive me, but "weasle-wordy".  I think doctors have a duty to warn about addiction and using that term is clearer to most people.  But we are talking about a duty to warn prior to going on these drugs.

 

Saying that you run the risk of iatrogenic dependence just doesn't convey the same message.

 

Now, on the other end of the spectrum, treatment for iatrogenic dependence needs to be very different from addiction.  I was in no sense "an addict".  I get that.  Yet the most help I got was from the addictions medicine community.

 

Sigh, this is difficult.  My wish is to keep all people off these drugs.  The doctors are the gatekeepers, they need education and tools.  If they wouldn't prescribe for more than a few weeks then none of us would be in this boat.

 

I don't want to get in a fight over this.  Language is important.  Clarity is important too.

 

 

Alison

No problem, Alison. No fighting at all here, just looking for clarity and appropriate language so we don't get treated with disdain and so that the truth is told. Every time the word "addiction" is used instead of "iatrogenic dependence" or "physiological dependence", then innocent people will suffer as a result. "Addiction" can be a very dirty word. One of the better UK documents I put up a number of months ago (60 pages) which was meant for health professionals made a clear distinction between treatments for benzo users who were addicts vs. prescribed dependents. Excellent document.

 

I think the doctors do have a duty to warn, but they should just say that "this medication can be very hard to withdraw from once you've taken it for more than a few days. It creates dependence in the body, and you can feel worse than you did before you started."

 

The pharmacists need to reinforce that information when someone picks it up at the pharmacy. Education, education, education.

 

The UK's "All Party Policy Group" recently changed its name from "for Involuntary Tranquiliser Addiction" to " for Prescribed Drug Dependence". It's about time.

 

One other reference is the Wikipedia entry on "addiction":

 

https://en.wikipedia.org/wiki/Addiction

 

 

 

 

 

 

I missed this thread.  Good to see another support service in England.

 

I know the language used is annoying. 

 

Fiona  :thumbsup:

 

 

I object very much to the word "craving" that is associated with benzo use by writers. What craving? That term needs to be erased entirely from the books when it comes to benzos.  And you're right, Lapis, that the word "addiction" lets doctors conveniently off the hook, and it puts us into a labeled box that is very, very difficult to get out of.

 

"Prescribed dependents" is an interesting term. I'd never heard that before. That puts the onus on doctors who fail to warn patients about the  dangers of taking these drugs past a few days.

 

But I have to agree with you, SS, that the word "addiction" gives an instant picture in the mind of someone writhing in agony, at least for me, and that w/d is a very painful ordeal. The word, however, is a double-edged sword. Say the word "addiction" to someone, and they get the picture very quickly. However, just as quickly comes the idea that a person abused the drug, and that's why they're in agony in the first place. It was their own fault. The person can then walk away easily with the thought that "I'm not that type of person" and continue to take their benzo drug, not realizing the nerve damage that is resulting.

 

I had a talk with my aunt one time, and I told her the problems I was having with benzo w/d. She told me that she took Xanax as prescribed and as a result didn't have a problem getting off the drug, implying that I may have abused the drug. She easily separated herself from me, although I told her that I took the pills as prescribed, "as needed." (A loaded term in itself.)

 

I think the word "addiction," when it relates to benzos, has caused an ongoing stumbling block when it comes to getting benzos put in the spotlight and there being a very proactive stance regarding the dangers in taking these drugs per doctors' prescriptions past a few days. Again, because of this word, doctors can continue to ignore patients who come in and want help in tapering off. Doctors can continue to leave a trail of pain behind them and keep their heads in the sand, due in large part to the word "addiction."

 

Another huge problem we face is that apparently most people can get off these drugs easily. Those who can't may be labeled conveniently as "addicts." It seems that until there's some sort of definitive test that lets doctors know who can easily get off these drugs vs. who cannot, it will continue to be easier for doctors and others to see us as people who have abused the benzo drugs instead of doctors digging further to find out the real truth, which is that people tend to updose when the physical and mental torture is beyond what they can endure. It's not, in any sense, related to "getting a high from the dopamine surge." That's an extremely naive notion, and the stupidity that the phrase entails HAS TO END.   

Thank you, Terry, once again for your insightful and intelligent post! Yes, I very much agree. Language matters. Clarity matters.

 

And I'm so sorry about that exchange you had with your aunt. Genetic differences define how we tolerate and metabolize medications, and for people not to understand that we're not all the same -- well, that's ignorant. They need to be educated. I'm sure it made you feel bad unnecessarily, and you didn't deserve that.

Thanks so much, Lapis!! 

 

Yes, I did feel badly about what my aunt said. It was our last conversation before she passed away. Well, it's water under the bridge now...

 

I find this conversation about the word "addiction" crucial in order for doctors to come to terms with what is at stake here - a whole new set of people being addicted to benzo drugs unnecessarily due to ongoing ignorance. I wish the ignorance and continuing cavalier attitude by doctors would end very soon!!

 

Oops, in reading this post hours after I wrote it, I find that I used the word "addicted," which I need to remember to replace with "prescribed dependents on benzo drugs." 

 

 

In an ironic twist, my doctor likely prescribed clonazepam so freely to me, i.e. with repeated refills over time, BECAUSE I don't have an "addictive personality". I took it "as directed". I didn't abuse it, or take more, or seek out another doctor or pharmacy for extra medication, etc.

 

If anyone looks up the word "iatrogenic", then they'll get what this is all about. I even had a doctor use it with me. She clearly understood the dynamics of what happened to me. The use of that word gave me back some dignity.

In an ironic twist, my doctor likely prescribed clonazepam so freely to me, i.e. with repeated refills over time, BECAUSE I don't have an "addictive personality". I took it "as directed". I didn't abuse it, or take more, or seek out another doctor or pharmacy for extra medication, etc.

 

If anyone looks up the word "iatrogenic", then they'll get what this is all about. I even had a doctor use it with me. She clearly understood the dynamics of what happened to me. The use of that word gave me back some dignity.

 

I know Lapis.  My doctor (psychiatrist) said the same.  I've never used any street drugs, drink alcohol very sparingly, have no addictive tendencies and yet I ended up having problems with the z-drugs in the sense of accidental addiction/iatrogenic dependency.  And due to the very short half life of the z-drugs, I was struggling with the feeling that I needed to take more of them when I awoke in the night so I divided my dose.  I was a complete mess the last 2 years on the drug - getting increasingly less and less sleep due to tolerance withdrawal, growing increasingly more ill each day in between doses due to interdose withdrawal.  It was a death spiral.

 

I feel like I dodged a bullet when I figured all of this out and found BBs.  I started, that day, the journey towards getting my life back.

 

If my psychiatrist had plainly said to me, SS you are in acute distress right now and these drugs will help you to sleep in the short term but they have real potential for addiction and will make the problem worse in the long term so we will not keep you on them past 4 weeks maximum, I would have completely understood.

 

But the doctors, they don't know.  They barely understand addiction and dependence.  They don't get any education in this regard.  This has to change.  My newish GP does get it but he says "I have probably 4 patients a day in here asking for refills for these medications.  I didn't put them on them long term, I inherited these patients.  If I try to talk to them about starting to cut back, they panic.  They meltdown.  It is impossible to reason with them.  I don't have the time and I don't have the tools.  I'm stuck - what am I to do?  I need help to deal with these patients, I cannot do it on my own.  I don't have the time to have these discussions in the course of a short 5 minute appointment."

 

I believe him and my heart goes out to him.  If there were tools like the Clarity Project is giving GPs then they could refer patients and the patients could get the help they need to come off these medications.  It is a long term proposition though and I cannot see your average GP being able to manage this process at all, even if they had the knowledge which they don't.

 

My Psychiatrist just threw out the Ashton manual and dismissed it.  I brought my husband to the next appointment and that went a bit better but he had no advice to give me vis a vis withdrawal.  I had to do it on my own with the help of BBs where I read voraciously before I ever posted when I jumped off.

 

I've subsequently talked to him about my protracted withdrawal and he was quite dismissive.  I see him once a year.  The first time, I said "so you are negating my experience?  I don't think much of that.  I've done this on my own and I can tell you what I've gone through is very real."  The second time, a year later, it went a bit better as he could clearly see I was doing a bit better and had by then gone to Daytox twice for help.  And I don't care.  I was the lucky one, I got clued in and got off.  I'd go through all this hell all over again to get well, and I am getting well.

 

What I have gone through is iatrogenic illness, iatrogenic dependency.  But if my doctor had told me about the potential for "addiction" even in people with no addiction issues, I would have understood.  I'm not sure that I would have understood a warning about iatrogenic dependency and I have years of university education.

 

But then again, I've never had anyone treat me like an addict.  And they would have a hell of a fight on their hands if they ever went there.

 

 

Ali

Omigosh, Ali, what an awesome post! I think so many of us can relate to what you experienced. I know I can. I haven't a clue where we'd all be were it not for Dr. Ashton and BB to provide information. BB was instrumental in helping me understand the cause of the dizziness.

 

When you recounted your doctor's plea/excuse about benzo/z-drug dependent patients, I thought of a well-written and fascinating article I read on that exact topic. The older doctors put the patients on the drugs, and the younger doctors were faced with issues of what to do. That article made me think about the huge scope of this problem and how many people it touches. So many areas of education need to be addressed, e.g. doctors/nurses/etc, pharmacists, public health organizations, media, general public, etc.

 

Good for you to be courageous at your doctor's office! Let's hope that what happened to you will inform your doctor's thinking process whenever he's writing benzo prescriptions (which he inevitably is).

Thanks Lapis.

 

I will not be silent.  Last week, I started an in person meetup.com group for people coming off benzos and sleeping medications, we will meet mid February for the first time.  In the space of a few short days, I've had 25 people sign up for the group as members, 7 confirmed for the first meeting.  I am very clear it is a peer support group and that they need medical supervision for their tapers but the chance to meet others going through this experience, even once a month, would have been a godsend to me in my withdrawal.

 

I am strong enough now at 32 months to speak out, to reach out, to share my journey and perhaps help others.  I couldn't have done it a year ago.

 

I am lucky here as we have two good Daytox programs with lots of free help for people, one in Surrey and on in Vancouver proper.  So there is lots of "boots on the ground" help for people to get support and the group can just provide emotional support.  We also have BBs, and that can provide on-line support 24 x 7, it is amazing.

 

I've also been asked to potentially sit on a committee for our local health authority to provide patient insight to their programs and offerings.  I'm exploring doing this as I feel that it is critical I give back having gone through so much.

 

But I am old enough and wise enough and have had enough life experience under my belt to feel strongly tha I can speak out.  I have very little to lose and so much to gain.

 

I so admire your posts on this part of the board Lapis.  Education is key.  It is paramount.

 

My gosh, waxing philosophical.  I'm preaching to the choir!

 

 

Ali

You go, Girl! Excellent work! I think this experience has touched us all on a very deep level and made us consider what role we might play. I think about it all the time. I'm nowhere near ready to do what you're doing, but I admire it so much. From the huge response to your call for participants, you've likely got a sense of how big this problem is. Wow!

 

As for me, yes, education is key. It's something I can do from where I sit/wobble around precariously. Those around me are well aware of what has happened to me, and I can only hope that my experience has made them think about medications and their effects. On BB, I'm happy to share whatever good info I come across and engage with the myriad intelligent, thoughtful, supportive people around here, of which you are most definitely one! 

The word "addiction" does give a real oomph when it comes to explaining to people about the dangers of drugs. I'm not sure, SS, that I would have truly understood if my doctor told me about iatrogenic dependency vs. addiction. In fact, when I went to the doctor in April, I was upset that she put in my chart that I'd been dependent on both Ativan and Klonopin. I figured that other doctors reading that wouldn't get the true significance of what I've been going through and might still give me a benzo drug to take for some reason. Maybe I can explain in my next appointment that I've been in protracted w/d for over whatever amount of months it'll be. Maybe the timeline will dig into doctors' heads that this has been and continues to be a very long process. 

 

And, yes, SS, it's wonderful what you're doing for the community!!  :thumbsup:

I don't think people have to use the word "iatrogenic" with patients if they're not going to explain it. What they DO need to do is to explain how the drugs change the body and what that can mean in the short and long term. Simple explanations can be used, but people need to be able to make an informed decision about a medication before they take it. It's the doctor's responsibility to provide the information.

Yes, an informed decision, by all means, Lapis. But the problem continues to be, especially in the U.S., that doctors DON'T KNOW what the dangers are about benzo drugs enough to even relate them to patients. The very people who are responsible for providing this information aren't understanding in any way how many symptoms can result or even the fact that benzo w/d lasts for a long period of time.

 

I was just reading today in Medscape that there's been an abrupt dip in hydrocodone prescriptions since it was changed from a Schedule III drug to a Schedule II drug.  The same thing needs to happen with benzo drugs - to change it from a Schedule IV to a Schedule II.

 

 

 

 

Of course, Terry. You're right. That's the crux of it.

 

If my psychiatrist had plainly said to me, SS you are in acute distress right now and these drugs will help you to sleep in the short term but they have real potential for addiction and will make the problem worse in the long term so we will not keep you on them past 4 weeks maximum, I would have completely understood.

 

But the doctors, they don't know.  They barely understand addiction and dependence.  They don't get any education in this regard.

 

 

See, here's the thing.  When I was put on benzos (and the AD), I was given no instruction *whatsoever* about *anything*.  And I'm talking sxs too, never mind "addiction" or "dependency" or any variation of that word.  There was simply no conversation and in my case, it was prescribed after complaining of frequent lightheaded spells.  Terribly gullible and naive at the time.

 

However!  (And, Lap, you already know this story  ).  At the time - about TWENTY years ago - a pharmacist friend of mine repeatedly tried to caution and discourage me, warning that they were very "addictive".  But now this is the important part - I had no idea what the term "addictive" even meant at the time.  In my innocence, I assumed he meant a psychological addiction, and I poo pooed the notion that I wouldn't have the "willpower" to quit them.  I was an on again/off again smoker and during cessation, I never even recognized my antsiness as a withdrawal symptom. 

 

Okay, so granted, perhaps I was more gullible, naive and unworldly  than most, sigh, but I truly wonder how many others there are around like myself?  Had I been given a detailed discussion/explanation about what a physical w/d entailed, I'd have been shocked!

 

And, also, I tend to harp a lot on the role of the pharmacist too.  If this pharmacist was so aware and so concerned for me all those years ago, where are the pharmacists in all of this today?  When someone walks in with a new rx for a benzo, is that not their job to consult and instruct and point out interactions, etc.?  We talk a lot about the doctors here, and that's a given, but I'd like to see pharmacists held accountable too!

 

Absolutely, abcd! I've been "harping" on the pharmacist thing too. I believe it's a major part of their role to educate and protect people about possible harms from their medications. I'd like to hear from some of them on this very topic. What do they know about benzos and the hellishness of withdrawal? Do they ever try to discuss possible effects of long-term prescriptions with their clients? If so, what has happened? Are they conflicted about these prescriptions, i.e. because they know they have a duty to warn but they don't want to cross a doctor? Etc. Etc.

 

Ah, so many questions.

http://www.dewsburyreporter.co.uk/news/local/an-end-to-the-hell-of-sleeping-pill-addiction-1-7290308

 

http://www.northkirkleesccg.nhs.uk/news/more-get-help-to-kick-tablet-habit/

 

https://healthwatchkirklees.co.uk/news/local-health-project-shortlisted-for-prestigious-award/

 

http://www.examiner.co.uk/news/west-yorkshire-news/huddersfield-woman-able-sleep-without-9657399

 

Focus on z drugs and benzos.  The last article, from the Examiner, gives a personal account of a woman who was helped to get off zopiclone and some great details on the program.  Seems like a short taper though, compared to my 10 month odyssey!

 

Very interesting pilot project.  Would love to see this in British Columbia.

 

 

Ali

Are you objecting to the use of the words "addiction" and "addict" as they apply to the use of z-class drugs or both to z-class drugs and benzodiazapines?  If you are objecting to the use of these words in connection with benzodiazapines, I have to disagree.  I am a benzodiazepine addict.  The pusher that got me addicted is a medical doctor.  The supplier of the junk is a pharmaceutical company.  The corrupt cops on the street that let the deal go down are the FDA and the government.  The use of the words "addiction" and "addict" does not shift responsibility from the pusher, supplier and corrupt cop to the victim.  Quite the opposite.  The use of these words, publicly and often, assigns responsibility right it belongs.  To those who have abused our trust.  Let them stew in these real words.  They deserve it.

The use of the words "addiction" and "addict" does not shift responsibility from the pusher, supplier and corrupt cop to the victim.  Quite the opposite.  The use of these words, publicly and often, assigns responsibility right it belongs.  To those who have abused our trust.  Let them stew in these real words.  They deserve it.

 

You are trying to misapply a medical term for shock value. The big problem with that is that it pretty much ensures that the problem will never go away and that the people who find themselves in this position in the future will be unable to get safe and humane treatment to help them heal from the changes these drugs have caused to their brains.

 

http://www.madinamerica.com/2015/11/language-surrounding-benzodiazepines/

 

http://www.madinamerica.com/2015/11/language-surrounding-benzodiazepines-part-ii/

 

I'm not sure how anyone could believe that that the people who are responsible for this problem are going to "stew in words". The only people stewing in anything are us unlucky people who are victims of an altered brain chemistry that can cause months or years of painful and debilitating symptoms.

This recent article discusses some of the issues that we've been discussing here re: addiction vs. physical dependence:

 

http://anp.sagepub.com/content/early/2016/04/15/0004867416644980.extract

 

The author explains clearly what many of us have stated before -- that is, that "addiction" denotes "compulsive drug-seeking behaviour", which is different from the "pharmacological dependence" that is caused by "the normal physiological adaptation to the presence of a substance that affects the central nervous system..."