Need statistics for communication with an author:How many of us are there?

Hi,

Wonder if someone else has done the hunt for statistics?

I have just written to an author who wrote an article entitled "mind games" in which he discussed the medication trend in psychiatry, amongst other things. I would like to post my e-mail to him and his response. I will ask him for permission, but I would like to get one more e-mail off to him first. He implied that one dr. person he interviewed suggested that drs. were getting a bad rap for long-term benzo prescriptions. I am paraphrasing here, but that is the general gist of it. Can anyone point me to any statistics that suggest that there are more than just a few of us? I will direct him here to our site and suggest he look at the number of members and number of posts.

However, I know that many of you have done much more research than I have, so wondered if anyone has come across any stats. that give a reasonable guess at how many of us are in this situation of w/d. I am not too naive about how accurate stats might be, but would like to have something to send back to him to perhaps give him a "hook" to consider writing about the problem we all seem to be having at different times.

Thanks in advance for any suggestions on where to look or any information anyone might have.

Western Europe and North America ?

I don't know much about Africa, Asia etc.

Honestly, I don't think they has been much of a general problem regarding long term prescribing of benzodiazepines. Not with prescriptions that started in the past few years.

The problem of overprescribing antidepressants and antipsychotics is much larger.

Many psychiatrists hand them out like candy.

One of the drugs that many psychiatrists are fond of is clonazepam/Klonopin/Rivotril.

A benzodiazepine, true. And one of the most dangerous benzodiazepines, if not the most dangerous.

I don't know about Xanax.

Some will also prescribe drugs like lorazepam long term, but only as an addition to other psychiatric drugs or when drugs like antidepressants have been inadequate.

Initiation of the prescription of drugs like Valium is old school. Although it seems to happen in a few countries. Australia ?

I don't think there are many people who suffer from the consequences of long term prescriptions of benzodiazepines. The people you meet on these forums are the exception.

In my experience, people who have problems with benzodiazepines usually have other health/(prescription) drug problems as well.

Infrequent and short term use of benzodiazepines is a different matter.

Hi,

Wonder if someone else has done the hunt for statistics?

I have just written to an author who wrote an article entitled "mind games" in which he discussed the medication trend in psychiatry, amongst other things. I would like to post my e-mail to him and his response. I will ask him for permission, but I would like to get one more e-mail off to him first. He implied that one dr. person he interviewed suggested that drs. were getting a bad rap for long-term benzo prescriptions. I am paraphrasing here, but that is the general gist of it. Can anyone point me to any statistics that suggest that there are more than just a few of us? I will direct him here to our site and suggest he look at the number of members and number of posts.

 

However, I know that many of you have done much more research than I have, so wondered if anyone has come across any stats. that give a reasonable guess at how many of us are in this situation of w/d. I am not too naive about how accurate stats might be, but would like to have something to send back to him to perhaps give him a "hook" to consider writing about the problem we all seem to be having at different times.

 

Thanks in advance for any suggestions on where to look or any information anyone might have.

Hanna,

I've been working on this the last few days.  It's hard to find stats on US iatrogenic addicts.  However,  here are some stats that you can you use to extrapolate.

The APPGITA in the UK puts their number at 1.5 million

http://www.appgita.com/index.php/2011/09/email-from-josh-jarrett-to-anne-milton-parliamentary-under-secretary-of-state-for-public-health-23-september-2011/

http://www.addictiontoday.org/addictiontoday/2011/07/benzo-reports-2011.html

The number of RX's written out for Benzodiazepines in the UK for 2010 was 10.5 million.

http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm101221/text/101221w0007.htm

The UK had a population of 61 million in 2010

http://www.trueknowledge.com/q/population_of_uk_2010

The US RX's for 2010 for "tranquilizers" was 108.6 million.  Up from 104 in 2009

http://pharma.about.com/od/Sales_and_Marketing/a/The-Most-Prescribed-Medications-By-Drug-Class.htm

Note there are 121.7 million for anti epilleptic which will include Benzos.  Also 66 million hypnotics and sedatives which undoubtedly will include Benzos as well. 

Population of the US in 2010: 308 million aprox..

http://en.wikipedia.org/wiki/United_States_Census,_2010

Number of US iatrogenic addicts: ?  I can only imagine the number based on mathematics alone.

A few things to remember:

These are numbers for the populations of only 2 countries in the world

Many addicts will stay on for life for fear of w/d or lack of knowlege on their situations or where to get help

Those you encounter on this support group and many others are those who are in fact voluntarily tapering or have been through a cold turkey detox .  This represents a fraction of the number as per the reason above

If you do bring info from this site you might want to draw the attention to new members per day as a percentage of total members 

Thanks for taking this battle up.  Let me know what else you need.  I'll try to check back in a few days. 

Christopher 

Thanks for the comments and suggestions!

Christopher,

Would you give me permission to use some of your information? I would like to quote your "benzobuddy" name as the source of some of the thoughts on this, if you don't mind. If not, no problem. I will direct the person to the links you have provided to me. I will probably be responding to his e-mail some time later this week.

Thanks for the comments and suggestions!

 

 

Christopher,

Would you give me permission to use some of your information? I would like to quote your "benzobuddy" name as the source of some of the thoughts on this, if you don't mind. If not, no problem. I will direct the person to the links you have provided to me. I will probably be responding to his e-mail some time later this week.

 

Have at it.  No problem

Hanna,

I am afraid I don't understand what you mean by "statistics"?

Hi jj nerd,

Thanks for the question. What I meant was: Is there any information about how many people have and are long-term recipients of benzos?; and is there any information (numbers) about how many people are dealing with drug dependence and/or withdrawal? Does that make more sense?

Hi Hanna,

Thanks for the proactive approach you are taking about the benzo problem.  I don't know how you would find any stats.  One constant that I heard from doctors in the past was that most people don't have problems withdrawing from benzos.  That and how they are safe and you can take them for the rest of your life.  There is no admission of any problem. Frustrating to say the least for all of us who are suffering.

I will ask my new doc about this when I have my physical, he does believe that withdrawal is difficult and can take a long time. He is at a large teaching hospital so perhaps he will have come data.

pianogirl

Hi Pianogirl,

Thanks. You gave me an idea, too - I can contact one of the mental health institutes that I have read about, that is concerned about benzo withdrawal and see if they can give me some information. I think it is really under-reported, as well. I am sure my dr. would not say that I was having any trouble, as she doesn't think I am despite my telling her my sxs, or would I be included in any database. Not that I think it is a cover-up, particularly, but I really don't think some of them are aware.

Please let me know if you find out anything! Also, good luck with your new doctor! Sounds hopeful for you.

Some interesting numbers. But I don't think they mean much regarding 'long term iatrogenic benzodiazepine addiction'.

A number of prescriptions, what does that mean ?

People can be prescribed hypnotics for no longer than 2 weeks, hypnotics can be prescribed for infrequent use, anxiolytics can be prescribed short term or for 2-4 weeks.

How many people have been prescribed benzodiazepines for long term daily use, initiated in the past few years ? Probably not many.

The UK numbers for diazepam are a bit odd. How many people are prescribed diazepam as a muscle relaxant (common) and how many are on repeat prescriptions that were initiated many years ago ?

In psychiatry, anxiolytic benzodiazepines are often prescribed short term either with or without antidepressants.

The same holds true for hypnotics.

I really don't think that benzodiazepines are worse in general than antidepressants or antipsychotics.

Some interesting numbers. But I don't think they mean much regarding 'long term iatrogenic benzodiazepine addiction'.

 

A number of prescriptions, what does that mean ?

 

People can be prescribed hypnotics for no longer than 2 weeks, hypnotics can be prescribed for infrequent use, anxiolytics can be prescribed short term or for 2-4 weeks.

 

How many people have been prescribed benzodiazepines for long term daily use, initiated in the past few years ? Probably not many.

 

The UK numbers for diazepam are a bit odd. How many people are prescribed diazepam as a muscle relaxant (common) and how many are on repeat prescriptions that were initiated many years ago ?

 

In psychiatry, anxiolytic benzodiazepines are often prescribed short term either with or without antidepressants.

The same holds true for hypnotics.

 

I really don't think that benzodiazepines are worse in general than antidepressants or antipsychotics.

 

The prescribing patterns were listed for a simple fact.  That Benzodiazepines are being prescribed for longer then a two to four week period.  If they were prescribed for only a two to four week period in one prescription, this would mean that half the population of the US was given a script for Benzodiazepines last year. 

I'd be careful in your assumptions of short term prescribing.  If this was the case, none of us would be here.

Christopher

My long term prescription was started 3 years ago.  Not only that, but I was reassured by several doctors that I could safely take it for the rest of my life. This has been happening for a long time and unfortunately continues today.

pianogirl

Hi Pianogirl,

I have had a similar experience - with suggestions just to change benzo when dependence occurred, so could go back on the first one later.

I really think that there is no easy way to know how many people are in this situation, so I am trying every avenue I can think of to get at least an estimate. I would guess that any estimate would be an under-estimate. That seems like a logical assumption, as people would not report long-term benzo use if they aren't in that situation. But there may be many people who are on them long term who haven't had dependence issues (yet?) or who are dealing with w/d, but certainly not noted in any database. The question seems to have more complex answers the more we are discussing it here, don't you think?

Yes Hanna, the question grows in complexity on all levels.  How many people stay on the benzos because they've tried getting off  and it is just too hard. Also how many people are poly drugged because of tolerance or wd effects that are taken for anxiety or other mental issues.  I really plan to talk to my internal med doc at my physical in a couple of weeks.  My problem with all of this is that I think this is an important issue whether or not we are a minority.  If people are suffering something needs to be done.

pianogirl

I wonder if there are really many long term benzo prescriptions for anxiety as monotherapy ?

Isn't that pretty much a case for a successful lawsuit ?

I have given some thought to the law suit angle for some time.

Please excuse my benzo brain, but as I see it a harm must be proven - dont' know the precise definition of harm in medical malpractice - permanent physical harm is obvious, but of course any harm must be able to be causally related to the benzos.

Secondly, there is the issue of malpractice as negligence or falling below accepted standard of practice. As far as I understand in the US, I don't think lifetime benzos prescription qualifies. I have seen no evidence that prescribing a patient beyond the recommended weeks long, short term use is considered below or outside standard of practice or care. The only exception I can think of where this could be called into question is the matter of prescribing an addict benzos. But, you can see where a dr (med or psych) could get around this problem, so long as it was not already in the record.

Which leads me to the angle I am thinking about which seems promising - related to informed consent. That the patient should have been properly warned that he/she could develop a dependency/addiction to benzos. I think this could be a promising avenue for lawsuit. Of course there would be difficulties: the defendants would say dependency is not really an issue as addiction is, and as many drs believe that the "new benzos" are somehow better than valium and less "addictive" , that would be a hurdle. Also, a dr could say that he did explain this to the patient verbally, as there really would be no requirement that the informed consent be in writing. The dr could argue that the benefit in his patent's case outweighed the risk of dependence/addiction. One might have to prove a post acute withdrawal syndrome exists, when as we know many in the medical profession deny it or are not aware or it, and literature is sparse. Lastly, I guess a person would have to prove that the dependence/addiction impaired him, and did cause harm in his life - another hurdle.

I think that a lawsuit would be more difficult than working toward making it mandatory that there be an informed consent given for each patient to sign when being prescribe benzos. I think drs would be a lot more wary about prescribing. But, even to achieve this would be a steep climb, I think.  If I were ever to expend my energy in "fighting back" I think this is what I would do.

Nuala

Although there may be some rare exceptions, prescribing benzodiazepines long term (years) for daily use can only lead to problems.

It should be obvious that this is wrong.

Although there are exceptions to this rule for example, palliative care and serious health conditions that cannot be treated otherwise.

Just wanted to clarify.

I think it is wrong and injurious to patients to prescribe benzos long term. I just meant that, as I view current US medical practice (from my experience and reading buddies stories here), physicians do not seem to see anything wrong with it. I actually have no concrete information concerning the prescribing of benzos long term (in the US)  - whether is considered by the medical profession to be within the standard of care. I just suspect it is, otherwise there would be more lawsuits, I would think. 

Nuala

Hi Pianogirl,

I have had a similar experience - with suggestions just to change benzo when dependence occurred, so could go back on the first one later.

I really think that there is no easy way to know how many people are in this situation, so I am trying every avenue I can think of to get at least an estimate. I would guess that any estimate would be an under-estimate. That seems like a logical assumption, as people would not report long-term benzo use if they aren't in that situation. But there may be many people who are on them long term who haven't had dependence issues (yet?) or who are dealing with w/d, but certainly not noted in any database. The question seems to have more complex answers the more we are discussing it here, don't you think?

Hanna,

It does grow more complex.  At this point, based on my bias towards this class of medication, I am including all benzodiazepine addicts in my search. Voluntary or involuntary.  When it comes to the addiction groups and facilities I am contacting, they don't differentiate between the two.  I am working on getting actual numbers but what I can tell you so far is that they consider this a major crisis.  Though they tend to group all RX addiction together, they are stating that this epidemic is far worse then meth, heroin, and other hard drugs.  The problem has surpassed even alcohol.  They essentially say that these medications are spilling out of medicine cabinets across the country allowing easy access for the younger addicts.  My point in contacting them is to get numbers but also to see how many of their addicts experience PWS.  If infact this class of medication proves to cause w/d in otherwise "healthy" individuals then it will discredit the underlying condition mentality that many pdocs use to keep their patients on them.  This would strengthen the case that it's the medications causing the condition.

Christopher

Hi all,

It seems all the major hospitals that have informational websites (Mayo Clinic etc.) recommend only short term use of benzos.  It must be obvious that docs are leaving patients on these meds way longer.  Is this a bury the head in the sand phenomenon.  How can they not know that long terms scripts are being written.  How can we get true statistics if everyone is looking the other way.

pianogirl

Hi:

I have a problem with calling people that were prescribed benzos by doctors drug addicts.  I don't call myself an addict.  I am chemically dependent.  I, like most other people that were prescribed benzos, was not informed by my doctor how quickly I could become dependent on them.  I was not told about possible side effects and certainly not about the 300 plus possible withdrawal side effects.

People that buy them off the street or raid their parents medicine cabinets to take them for recreational use are drug addicts.  Our mistake was in trusting our doctors and for that I don't think I should be referred to as a drug addict.

Nancy

Hi Nancy,

I couldn't agree with you more. I think someone who is an addict usually craves the "drug of choice". I have not ready any posts here of people "craving" benzos or trying to figure out how to get more!!!! Rather, there is obvious anguish when people have to reinstate.

Addiction implies to me to some extent, that it is something a person does to him or herself - not always a choice - as addictions come with their own issues and difficulties. I just totally agree that this is not a self-medication for us - particularly here, where we are all trying to safely get off these drugs and all are suffering to some extent with the side-effects; in many cases, many side-effects and horrible ones, for sure.

I think Pianogirl is absolutely right that it will be impossible to get statistics. I liken it to getting stats. about people using steroids illegally. There is no way to get stats. For us; the irony is that we are all taking drugs given us legally be qualified health professionals and it shouldn’t be too difficult to find numbers, if anyone in the health care field wanted to get them.

I really started this thread, because I wanted to see if there is any information out there so that I could perhaps "hook" a journalist into looking into it more.

To give you more background, here is a part of the e-mail I wrote to the journalist:

“One quote in the article by Professor *** was particularly salient to the issue that seems to have arisen from the current trend in psychiatric care. You quote Professor *** as saying; “One of the disadvantages is instilling in people that normal life includes chronic medication”. I think this is a perceptive observation. I think the terrible development he mentions also includes personal pain that prescription of drugs has created for many people. The consequence of the actions of well-meaning psychiatrists attempting to help people deal with their psychic pain through prescription medication can now be more problematic for some people than were the original difficulties they experienced.

            One group of people for whom long-term use of medication has proven to be a difficulty are people who have been prescribed benzodiazepines. There is research suggesting that long-term use of these medications is contraindicated although there is still widespread prescription. I refer you to the work of Professor H. Ashton, who was aware of the strong physical dependence that could occur with use of this class of drugs and implemented a regime to help individuals successfully stop taking them, through a slow tapering schedule. There is other compelling literature, since the pioneering work of Professor Ashton, that notes the difficulty of dependence and subsequent withdrawal from these medications.

            I am one individual who was prescribed a benzodiazepine for long term use years ago, by a very ethical, concerned psychiatrist. I have developed dependence withdrawal and suffered terribly, far more during dose reduction than I ever did with the symptoms for which the medication was originally prescribed. There are many other people in similar situations. These people have never used the drugs illegally or for “recreation” and now find themselves struggling painfully while withdrawing from the medication.

            I read with interest much of the information about your work, when I went to your website. I think a fascinating sequel to your recent article would be to determine what has happened to many of the people who are living with benzodiazepine dependence and withdrawal. Perhaps you would consider doing such a piece at some time.”

I will not include the reply from the journalist, as I think I should ask his permission first and I wanted to get as much information as I could from “us” before e-mailing him back. I intend to contact him soon. He did suggest he would think about writing an article if he could find the “right angle”, which made me think that maybe we could give him an “angle”. I think his response to me was very positive and his comment about “angle” which I first took in a negative sense, was really just a term for finding the right way to look at the issue. That is why I figure we could maybe give him that “angle”, or as I prefer to call it, a hook!

I am glad this has generated so much thought and so many good ideas. As I said, I will write to this person and let everyone here know how it goes if I hear back from him.

Hi:

 

I have a problem with calling people that were prescribed benzos by doctors drug addicts.  I don't call myself an addict.  I am chemically dependent.  I, like most other people that were prescribed benzos, was not informed by my doctor how quickly I could become dependent on them.  I was not told about possible side effects and certainly not about the 300 plus possible withdrawal side effects.

 

People that buy them off the street or raid their parents medicine cabinets to take them for recreational use are drug addicts.  Our mistake was in trusting our doctors and for that I don't think I should be referred to as a drug addict.

 

Nancy

The formal term is Involuntary Tranquilizer Addiction.  Hence the group APPGITA which is supported by Heather Ashton.  The stigma of addiction or addicts should be avoided in this research as it is avoided by this site.  This class of medication appears to have the same negative effects on those taking it regardless of pretense.  My goal and that of others is to have it restricted to hospital use only.  For it to be available to people to take recreationally means that it was overprescribed to begin with.  You cut off the supply and the addictions go away.  Voluntary or Involuntary.  For what it's worth, I too was prescribed Xanax and kept on it by MD's who told it me it was safe to stay on for the rest of my life.  

Christopher  

There are many definitions.

Usually, 'addiction' is about behavior.

'Involuntary Tranquilizer Addiction'

That suggests that the people in question just can't keep themselves from taking pills.

As if not taking the 'pills' is a mere inconvenience !

Honestly, I'm not familiar with APPGITA.

Personally, I'm not a fan of either the Ashton approach or the psychiatric approach for benzodiazepine withdrawal.

But for various reasons there will not be major new research projects regarding 'benzodiazepine withdrawal'.

One of the classic limitations regarding the Ashton approach: -http://www.benzo.org.uk/ashvtaper.htm-

'Binding of clonazepam to receptors that do not bind to other benzodiazepines and action on sodium channel conductors are relevant to anticonvulsant effects, not tranquillising effects. The fact that clonazepam has sedative and anxiolytic actions and typical adverse effects of benzodiazepines including ataxia, irritability, depression and tolerance shows that there is little overall difference.'

So why would binding to sodium channels be irrelevant ?

It probably isn't if someone is (fully) physically dependent.

I see the Ashton protocol as rather limited/rigid, and not for everyone. Diazepam isn't a miracle drug for everyone. I sometimes get the feeling that this approach is most suited to those with anxiety issues.

If you have comorbid health issues it's a different matter altogether.

The psychiatric approach can be anything, but often involves antidepressants, antipsychotics and getting people off one drug and on another, and diagnosing people with made-up diseases.

In general, iatrogenic illness is the hardest to treat.

'My goal and that of others is to have it restricted to hospital use only.  For it to be available to people to take recreationally means that it was overprescribed to begin with.  You cut off the supply and the addictions go away.  Voluntary or Involuntary.'

I disagree.

Example: someone has extreme insomnia. (e.g. hasn't slept for a few days at all) Infrequent or short term use of hypnotics can be useful. I don't know about anxiety. As much as I disagree with the common practice of prescribing antidepressants for anxiety, many patients and psychiatrists find short term use of anxiolytic benzodiazepines as an adjunct useful and necessary.

I really don't think that a practice of restricting the use of benzodiazepines in favor of antidepressants and antipsychotics makes things better.

'For it to be available to people to take recreationally means that it was overprescribed to begin with.  You cut off the supply and the addictions go away.  Voluntary or Involuntary.'

Really ? So that's why the War on Drugs is such a success ?

If there is demand, there will be supply. I must say that I don't know how 'common' patients and their doctors would react if they could no longer get the benzodiazepines from their doctor.

Btw, recklessly prescribing benzodiazepines often begins/(began?) in hospitals.

It would seem possible to get reliable statistics by asking the people/patients. Utilizing various methods and approaches (surveys?) could potentially get you reasonable statistics.

Hi jj nerd,

Thanks for the question. What I meant was: Is there any information about how many people have and are long-term recipients of benzos?; and is there any information (numbers) about how many people are dealing with drug dependence and/or withdrawal? Does that make more sense?

Hi Hanna,

Wow, I have wondered exactly the same thing for a long time-how many of us are there?  The problem is that there are so many people who are probably suffering in silence.  I know I did before I found this site.  I would be very interested to know the statistics. 

Jenn