Why so few scientifically documented studies re: results from tapers/cessation?

If you read "In the News" threads, there are more than ample scientifically conducted studies being published re: the risks associated with the use of benzodiazepines, deprescribing protocols, etc. But, I haven't seen many scientifically conducted studies documenting the cognitive & physical impairments or improvements associated with deprescribing protocols and benzodiazepine taper/cessation efforts. There are plenty of opinions but few scientifically documented results.

 

The studies that have been published show rather dismal cognitive & physical results for the people who have discontinued benzodiazepines. There are two such mega data studies published "In the News" thread.

 

Don't get me wrong, it would be a great thing if deprescribing & cessation is advantageous and successful provided that any associated cognitive & physical symptoms are not made worse. i.e. Do the benefits of deprescribing & cessation of benzodiazepines outweigh the risks?

 

It seems odd to me that if deprescribing & cessation of benzodiazepines is such a wonderful thing, including the cognitive & physical effects on patients, why isn't there more scientifically documented evidence being published to support those efforts? Anecdotal evidence such as success stories on bb, facebook, etc. isn't scientifically documented evidence.

 

I'm not the only one who would like better answers to these questions. Inquiring minds want to know:

 

Are there few scientific & documented follow ups being conducted? If that's true, why? Are the results (good or bad) being ignored or censored? If that's true, why? How long do most successful tapers take? How long does it take for most people to 'heal' or stabilize? Do people 'heal' while tapering? Do people 'heal' after tapering? What are the risks associated with deprescribing & cessation protocols on the cognitive & physical well being of patients? Is up-dosing beneficial and if so under what circumstances? Is reinstatement useful and if so under what circumstances? If there is no scientific and documented proof of advantageous results, especially of the cognitive & physical effects on patients, why are these protocols & practices being advocated? Is there an undisclosed agenda?

 

The Ashton publications are becoming very dated and the tapering methods & the protocols she used to measure the results have been brought into question by both her peers and by people who continue to use or are considering to use her publications as the 'gold standard', so please don't quote her manual in replies to these questions. 

 

Show us the proof!

 

best wishes

All very good questions!

Fi, have you checked PubMed for the type of studies you're looking for? Just put the search words you want to include, e.g. benzodiazepine taper, in the search box and see what you come up with. I got 154 hits with those two words.

 

Here's a link to Deprescribing.org (Canada) research:

 

https://deprescribing.org/research/ 

 

Perhaps you can contact them directly and pose your questions to them.

Yes Lapis, I search daily. As I said, there are ample articles supporting deprescribing & cessation from benzodiazepines but, those articles fail to show scientific evidence of the benefits out-weighing the risks especially upon the cognitive & physical effects on the patients.

 

 

All very good questions!

 

Yes, they are questions I've seen many others post & are inter-dispersed all over the bb board. There are lots of questions from those of us who are affected but few answers from the scientific community.

 

Personally, I have a difficult time advocating for methods & protocols which can cause detrimental cognitive & physical effects upon people without scientific evidence that supports the benefits out weighing the risks. 

Perhaps you can pose your questions directly to Deprescribing.org. There's also this organization:

International Deprescribing Research Interest Group at https://www.researchgate.net/project/International-Deprescribing-Research-Interest-Group . Why not reach out to them?

This is from your link:

 

Goal: A repository for researchers and collaborators to share descriptions of their work and information about ongoing and upcoming deprescribing initiatives.

 

This is obviously a pro deprescribing group and they fail to address the cognitive & physical risks that deprescribing has on the patients (victims).

 

They cite such things as possible risks from falling down, etc. but fail to mention risks such as suicide ideation, possible permanent decline in cognitive & physical functions, inability to return to normal work functions and similar life changing events.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

From Deprescribing.org:

 

Researchers across Canada and internationally are working on projects that promote and evaluate deprescribing medications. We’ve included descriptions of work that we are involved in; Tweet links to descriptions of your own research, and join the International Deprescribing Research Interest Group to collaborate and share your work with other researchers.

If you read "In the News" threads, there are more than ample scientifically conducted studies being published re: the risks associated with the use of benzodiazepines, deprescribing protocols, etc. But, I haven't seen many scientifically conducted studies documenting the cognitive & physical impairments or improvements associated with deprescribing protocols and benzodiazepine taper/cessation efforts. There are plenty of opinions but few scientifically documented results.

 

The studies that have been published show rather dismal cognitive & physical results for the people who have discontinued benzodiazepines. There are two such mega data studies published "In the News" thread.

 

Fi, I actually can't recall seeing one such study focused on quality of life after withdrawal.  You say there are two posted here, are you able to share the links.  Thanks.

If you read "In the News" threads, there are more than ample scientifically conducted studies being published re: the risks associated with the use of benzodiazepines, deprescribing protocols, etc. But, I haven't seen many scientifically conducted studies documenting the cognitive & physical impairments or improvements associated with deprescribing protocols and benzodiazepine taper/cessation efforts. There are plenty of opinions but few scientifically documented results.

 

The studies that have been published show rather dismal cognitive & physical results for the people who have discontinued benzodiazepines. There are two such mega data studies published "In the News" thread.

 

Fi, I actually can't recall seeing one such study focused on quality of life after withdrawal.  You say there are two posted here, are you able to share the links.  Thanks.

 

abcd: Both studies are mentioned in this very long & controversial (among bb members) link:

 

http://www.benzobuddies.org/forum/index.php?topic=209847.0

 

The authors state, “These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

The Ashton publications are becoming very dated and the tapering methods & the protocols she used to measure the results have been brought into question by both her peers and by people who continue to use or are considering to use her publications as the 'gold standard', so please don't quote her manual in replies to these questions. 

 

Show us the proof!

 

best wishes

 

You ask for proof but choose to disregard the best evidence we have available?

 

Ahston's research is incomplete (she has stated this herself) but I don't see how it could really be "dated" given the fact that no one has picked up where she left off. The tapering advice we could probably say is dated given the fact that there is a ton of anecdotal evidence about that, but regarding the cause of what we are experiencing or the long term prognosis, if there isn't any new proof you can't just throw out the information that is there.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

 

seltzerer, Can you please provide the scientific evidence that supports your opinion that it is "safer to get off and that withdrawal side effects are mostly temporary"?

 

As indicated in the link I just provide for abcd, the most recent meta data analysis concludes:

 

“These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

 

The Ashton publications are becoming very dated and the tapering methods & the protocols she used to measure the results have been brought into question by both her peers and by people who continue to use or are considering to use her publications as the 'gold standard', so please don't quote her manual in replies to these questions. 

 

Show us the proof!

 

best wishes

 

You ask for proof but choose to disregard the best evidence we have available?

 

Ahston's research is incomplete (she has stated this herself) but I don't see how it could really be "dated" given the fact that no one has picked up where she left off. The tapering advice we could probably say is dated given the fact that there is a ton of anecdotal evidence about that, but regarding the cause of what we are experiencing or the long term prognosis, if there isn't any new proof you can't just throw out the information that is there.

 

FG, I'm not throwing out that information but, it has been rehashed here over & over.

 

The questions that I posed in the OP are from fellow bb members & are inter-dispersed among many threads through out this board.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

 

seltzerer, Can you please provide the scientific evidence that supports your opinion that it is "safer to get off and that withdrawal side effects are mostly temporary"?

 

As indicated in the link I just provide for abcd, the most recent meta data analysis concludes:

 

“These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

Search for benzodiazepine long term use and you'll see a lot of studies mention long term use is not beneficial.  My own experience informs my opinion as well.  Not just going through benzo w/d but also the experiences of others who have been through it.  My impression of the article you're referring to was that it was weak evidence.  I would not get hung up on one research article and assume it is proof. 

"Benzodiazepine tapering: A prospective study"

 

https://www.ncbi.nlm.nih.gov/pubmed/20629611 

 

Have a look for the full study.

 

 

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

 

seltzerer, Can you please provide the scientific evidence that supports your opinion that it is "safer to get off and that withdrawal side effects are mostly temporary"?

 

As indicated in the link I just provide for abcd, the most recent meta data analysis concludes:

 

“These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

Search for benzodiazepine long term use and you'll see a lot of studies mention long term use is not beneficial.  My own experience informs my opinion as well.  Not just going through benzo w/d but also the experiences others' who have been through it as well.  My impression of the article you're referring to was that it was weak evidence.  I would not get hung up on one research article and assume it is proof.

 

Actually it was a meta analysis of several studies which were follow ups to another meta analysis of several studies but, that was all discussed & argued out in that post & I don't think it would be productive to rehash it here.

If you read "In the News" threads, there are more than ample scientifically conducted studies being published re: the risks associated with the use of benzodiazepines, deprescribing protocols, etc. But, I haven't seen many scientifically conducted studies documenting the cognitive & physical impairments or improvements associated with deprescribing protocols and benzodiazepine taper/cessation efforts. There are plenty of opinions but few scientifically documented results.

 

The studies that have been published show rather dismal cognitive & physical results for the people who have discontinued benzodiazepines. There are two such mega data studies published "In the News" thread.

 

Fi, I actually can't recall seeing one such study focused on quality of life after withdrawal.  You say there are two posted here, are you able to share the links.  Thanks.

 

abcd: Both studies are mentioned in this very long & controversial (among bb members) link:

 

http://www.benzobuddies.org/forum/index.php?topic=209847.0

 

The authors state, “These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

Here's the full study, FYI, from the above Mad in America article.  I haven't read it yet, but the cited references might be helpful in your research.

 

https://sci-hub.tw/10.1093/arclin/acx120

 

 

 

(Wrong link, edited post to add the correct one )

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

I don't see your characterizations of the scientific evidence.  It's quite apparent to me, it's safer to get off and that withdrawal side effects are mostly temporary.

 

seltzerer, Can you please provide the scientific evidence that supports your opinion that it is "safer to get off and that withdrawal side effects are mostly temporary"?

 

As indicated in the link I just provide for abcd, the most recent meta data analysis concludes:

 

“These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

Search for benzodiazepine long term use and you'll see a lot of studies mention long term use is not beneficial.  My own experience informs my opinion as well.  Not just going through benzo w/d but also the experiences others' who have been through it as well.  My impression of the article you're referring to was that it was weak evidence.  I would not get hung up on one research article and assume it is proof.

 

Actually it was a meta analysis of several studies which were follow ups to another meta analysis of several studies but, that was all discussed & argued out in that post & I don't think it would be productive to rehash it here.

 

The fact that it's a meta analysis does not necessarily mean it's anymore definitive.  They're used a lot to pool data.  Think more in terms of several RCTs to establish causation.  And I don't doubt there's some cognitive impairment in some people.  I don't know if it's due to w/d or long-term use or a combination, etc.

 

Benzo carry a whole host risks - memory impairment, poor cognition, dizziness, weakness, depression, headache, insomnia, confusion, irritability, aggression, on and on.  Are you really saying it's better to stay on that stuff and that you'll continue to experience these things and worse if you do get off?  I would suggest doing more research if your conclusion is that it's better to stay on.  And withdrawal syndromes are very well known with many drugs that affect neurotransmitters.  Many of the symptoms are temporary.

Your situation, Fi, seems quite rare to me.  A minority stay on for as long as you have and I think an even smaller minority feel that they would prefer to stay on for fear of permanent damage.  It's a minority of a minority as far as I can tell.  It doesn't generalize and I don't think you'll ever see the type of evidence you're looking for.  I don't think we'd be able to make reliable judgements from any systematic research on cases like yours so as it's stated a lot in the literature, further treatment should be considered on a case by case basis.  You want to stay on and I think I would too if I were you but I wouldn't try to generalize your case to others.

Your situation, Fi, seems quite rare to me.  A minority stay on for as long as you have and I think an even smaller minority feel that they would prefer to stay on for fear of permanent damage.  It's a minority of a minority as far as I can tell.  It doesn't generalize and I don't think you'll ever see the type of evidence you're looking for.  I don't think we'd be able to make reliable judgements from any systematic research on cases like yours so as it's stated a lot in the literature, further treatment should be considered on a case by case basis.  You want to stay on and I think I would too if I were you but I wouldn't try to generalize your case to others.

 

Perhaps we should agree to disagree.

 

My case is not that extraordinary, my doctors have agreed. In the U.S. over 5% of the population uses prescribed benzodiazepines. That percentage would be higher if illegal use were accounted for. The majority of long term users (over 4 weeks) continue to use them, about 2/3 if I remember correctly, whether or not they 'prefer' to use them. Other countries, such as Japan, have even higher percentages of long term users. The rate of prescribing has increased dramatically, though it may have leveled off in 2017-2018, that remains to be seen.

 

The major point of this post, although many unanswered questions are posed, is that not enough scientific documentation or effort has been devoted to determining whether or not a benzodiazepine dependent person is better off (suffers more or less cognitive & physical disabilities) from continuing long term use in the form of maintenance dosages or cessation from long term use.

 

The best data I've seen (the meta analyses referenced above) indicates: "..that a range of neuropsychological functions are impaired as a result of long-term benzodiazepine use, and that these are likely to persist even following withdrawal."

 

imo, In the absence of scientific data to show which is a better form of treatment (cessation or maintenance dosages of benzodiazepines), it is speculative at best and perhaps detrimental to support one form of treatment over another.

If you read "In the News" threads, there are more than ample scientifically conducted studies being published re: the risks associated with the use of benzodiazepines, deprescribing protocols, etc. But, I haven't seen many scientifically conducted studies documenting the cognitive & physical impairments or improvements associated with deprescribing protocols and benzodiazepine taper/cessation efforts. There are plenty of opinions but few scientifically documented results.

 

The studies that have been published show rather dismal cognitive & physical results for the people who have discontinued benzodiazepines. There are two such mega data studies published "In the News" thread.

 

Fi, I actually can't recall seeing one such study focused on quality of life after withdrawal.  You say there are two posted here, are you able to share the links.  Thanks.

 

abcd: Both studies are mentioned in this very long & controversial (among bb members) link:

 

http://www.benzobuddies.org/forum/index.php?topic=209847.0

 

The authors state, “These results are indeed significant, for they challenge earlier findings that benzodiazepine users who are successful in withdrawing from benzodiazepine can expect recovery in cognitive functioning.”

 

Thank you for asking this, Fi Addendum. I think it is an extremely valid point. I am very happy that there are medically safe tapering protocols out there, but my motivation in following medically safe tapering protocols really lies in hopes of minimizing the further damage to my brain and my body & my central nervous system more than in hopes of some fantastic life after eventual benzo cessation.

 

Essentially, here in the United States, the medical profession has gotten in trouble for prescribing benzodiazepine too liberally for many years (in spite of repeatedly being warned not to since the late 1970's - which I'd found out while tapering) and seeing overdose deaths associated with a combined benzodiazepine and opiate use. As someone who doesn't take opiates but has taken benzos long-term, I have quickly seen how willing the doctors are to stop writing scripts to those who have been made iatrogenically ill by benzodiazepines and blame it 100% on addiction (the addiction language is very powerful here) and find every reason in the book not to prescribe these medications any more or try to substitute it with other medications that are completely unsuitable replacements that would just equate to cold turkey off of benzodiazepine.

 

I informed myself as much as possible and understood that I was in a poorly understood/unspecified condition called "benzodiazepine withdrawal" or "benzo withdrawal" and that my best hopes are to try to switch to a long-term benzodiazepine called diazepam to be able to withdraw from them even more safely.

 

This move has probably halted a lot of damage that I would have incurred on the dose of lorazepam I was on, but has opened the door for me to be even more ridiculed and stigmatized by medical professionals (as lorazepam seems to be more socially accepted medication in the U.S. than diazepam - in spite of potentially being a much more dangerous one of the two), and being shamed along the lines of being a drug addict and even being ordered a urine test which showed nothing else except for the presence of benzodiazepines.

 

Suddenly, my doctor at the time kept repeating how I should not be on benzodiazepines anymore and how I was "still young" (does that make it ok to start drugging someone with benzos who is not "still young"?), but anytime I made small reductions and the symptoms would get worse (including blood pressure), he would also panic at the same time, which led me with conflicting messages.

 

I quickly realized that I was no longer tapering benzodiazepines just to be free of them, but it was clear to me that I was tapering them off to avoid being negligently cut off by a doctor trying to avoid liability.

 

Fortunately, I have found new doctor by a sheer luck/the goodwill of the Universe/the grace of God/whatever your views are, but it made me seriously think that whether all the support I'd been given to reduce my dependence on these drugs had been to actually save my life due to the lack of any help for people in this situation (due to addiction language stigma) more than due to the will to live an improved quality of life without benzodiazepines. While living benzo free is a wonderful long-term goal, I do seem to be motivated by fear more than I seem to be motivated by any promises of a better life post-cessation. I wonder how many people are in that same position where their desire to come off benzodiazepines fully or almost fully is motivated by fear more than by any other emotion or logical reason.

 

It goes without saying that, had I known what would have happened to me, I would have never started on a benzo and would have found a safer way to cope with my problems, but that time has long passed, and I am in "now" as opposed in "then", so the thinking priorities are quite different. I have found that ruminating about the past makes me worse, and it makes the depression/anxiety way worse.

 

I log in here and find comfort seeing people in similar predicament sharing similar regrets about starting on a benzodiazepine, but I am also finding that over-focusing on the negatives of the benzos makes me so anxious that I keep wondering if I should post more in the Anxiety thread. But I don't see very many people posting there, and I feel silly posting there, where so few post. I reason that there might be few who post there because nobody wants to be perceived as not in control or 'crazy'.

 

As everyone else, I like safety in numbers, so I stick to threads in Withdrawal Support, Chewing the Fat and similar, as those seem to be where most people are, which helps me feel less isolated at times. But, the anxiety still remains unaddressed, and I often read that one never fully heals until off of a benzo. But, if my anxiety is this great while on a smaller amounts of benzos, I certainly need to build more coping skills before imagining being benzo free.

 

Of course, I'd really like to see more activity in the Anxiety section, but until that happens, I have enlisted assistance from a calming and helpful therapist in hopes hat he can help me with reducing the anxiety I am dealing with.

Can we define "Maintainance Dose" as opposed to just being "on med"..??

 

 

I totally support the idea of better scientific studies, but I would disagree that anecdotal reports are not, or can't be scientific The gold standard of placebo controlled, double blinded studies only apply to a particular scenario where individuals in one are given the tested  substance and another group a placebo and the aim is to look for results in specific markers This kind of science just does not generally apply in the real world. This is why studies on diets, or any any studies that require self reporting, are not up to the given gold standard. Now if you could get people to enter a facility where the test subjects can be observed and controlled then you have a chance to do well controlled studies that would likely meet the kind of science you are asking for.

 

In the meantime I would suggest we try to gather all the anecdotal reports we can with as much corroboration of their veracity as possible

Your situation, Fi, seems quite rare to me.  A minority stay on for as long as you have and I think an even smaller minority feel that they would prefer to stay on for fear of permanent damage.  It's a minority of a minority as far as I can tell.  It doesn't generalize and I don't think you'll ever see the type of evidence you're looking for.  I don't think we'd be able to make reliable judgements from any systematic research on cases like yours so as it's stated a lot in the literature, further treatment should be considered on a case by case basis.  You want to stay on and I think I would too if I were you but I wouldn't try to generalize your case to others.

 

Perhaps we should agree to disagree.

 

My case is not that extraordinary, my doctors have agreed. In the U.S. over 5% of the population uses prescribed benzodiazepines. That percentage would be higher if illegal use were accounted for. The majority of long term users (over 4 weeks) continue to use them, about 2/3 if I remember correctly, whether or not they 'prefer' to use them. Other countries, such as Japan, have even higher percentages of long term users. The rate of prescribing has increased dramatically, though it may have leveled off in 2017-2018, that remains to be seen.

 

The major point of this post, although many unanswered questions are posed, is that not enough scientific documentation or effort has been devoted to determining whether or not a benzodiazepine dependent person is better off (suffers more or less cognitive & physical disabilities) from continuing long term use in the form of maintenance dosages or cessation from long term use.

 

The best data I've seen (the meta analyses referenced above) indicates: "..that a range of neuropsychological functions are impaired as a result of long-term benzodiazepine use, and that these are likely to persist even following withdrawal."

 

imo, In the absence of scientific data to show which is a better form of treatment (cessation or maintenance dosages of benzodiazepines), it is speculative at best and perhaps detrimental to support one form of treatment over another.

 

Haven’t you been on benzos for more than 40 years?    I’m sure that’s rare.  I wonder too if you tried to get off what your quality of life would be and how long it would take to recover if at all.

 

There’s no benefit to benzo dependence though.  You’re misreading the evidence if you think it’s speculation to suggest it’s better to get off.  I agree too there are questions of what’s best to do for those in an already difficult situation because there is reason to believe there would be disability and long-term damage if people were forced to get off.  I don’t think you’ll see this research though.  Happy to agree to disagree there are not enough numbers to reliably investigate.  Not to mention research dollars and interest/need.