Comprehensive Benzodiazepine Guidance Document, UK, 2014

[[...]]

Lap, thank you for posting this document.  Unfortunately, I'm unable to read all of it but I did scan it briefly.  The information you post here and on the Dizzy Group has helped inform and educate so many of us.  Much, much appreciated. 

 

WR, I'm so sorry you had such a bad reaction to that one comment, geez, I know how easy it is when our CNS is so over sensitized, it doesn't take much to throw us off the deep end.    For what it's worth, I personally think that so called "fact" is very irresponsible.  I agree with Lapis that there are *so* many variables, that's it's near impossible to categorically state anything as "fact".  It would take a huge study and follow up until end of life really, wouldn't it, to make such a statement!?  And as LF puts it, 80% healed sounds just dandy to me!  I'm so glad you were able to reframe and see this from a different perspective.  Please continue to do whatever you can to calm and soothe yourself, and keep that hope alive!

[[La...]]

Well, abcd, it's a pretty dense document, so scanning is just fine! And of course, it's my pleasure to share info when I find it. It's good for us all to discuss what we read and learn -- especially the things that might be more challenging. This document addresses issues I hadn't thought of much before, including the prison population and pregnant women. It makes great efforts to differentiate between different kinds of benzodiazepine users, so for those who don't like to be labelled improperly, it's hopefully more acceptable than some articles that we've seen recently.

 

[[Be...]]

Any article that states that benzo's can cause permanent damage is being irresponsible. They don't even know what's happened to us in our brains and bodies since no solid human research has even been done to determine the long term or short term effects of these benzo's on and off them?  How can they possibly know for sure that s/x's that they claim are permanent are caused by the benzo's?  You absolutely can't make that jump.  No way.  If they knew how these drugs even work in the body then they could study body cells and know for sure, that sort of thing.  Ppl. who get knocked in the head too much, such as football players and boxers, have had their brains looked at under a microscope post mortem and they can see signs of the brain damage in their brain cells.  They all have certain similarities, so some assocation or relationship can be establised there.  Who has ever had their brain or nerve cells looked at under a microscope post mortem who had been on benzo's and had lasting s/x's?  They would need to do extensive studies on lots of ppl. on and off the benzo's to make any conclusions about it.  It's never happened as far as I know.  It's all assumptions, IMO.   

[[lo...]]

I have only read bits of this document but on page 17 it does state that the possibility of permanent brain damage has never been adequately studied and remains controversial.

 

I am not sure which bit upset NCYW.  Still looking for it but may take me a while. 

 

Hugs

 

LF 

[[Be...]]

I didn't read this document yet, but I read articles and posts in the past claiming that permanent damage stuff.  There is no scientific basis for it. 

[[lo...]]

May have found the bit that upset NCYW.

 

It states that dependence may become a permanent state i.e.  some people won't be able to come off the drugs.  Haven't found anything about not healing!!

 

Anyone else read the section about long term use?

 

LF 

[[Br...]]

May have found the bit that upset NCYW.

 

It states that dependence may become a permanent state i.e.  some people won't be able to come off the drugs.  Haven't found anything about not healing!!

 

Anyone else read the section about long term use?

 

 

Hello Lookingforward .  I scanned section 4.1 "Specific problems with long-term use" but couldn't find anything very new or upsetting.

 

 

 

 

 

[[La...]]

I'm not sure either, but I'm wondering if it might be this section from page 19. Note the use of terms "are not thought to" and "may" and "it can in some cases". There's much uncertainty there. Also, the reference is from 1997. None of this can be taken as an absolute.

 

 

 

"Long-term use of benzodiazepines and other drugs produces chronic changes in receptor

functioning in the central nervous system and benzodiazepine receptors are not thought

to return fully to their pre-addiction state following detoxification and abstinence. As with

all addictions, psychologically conditioned effects may be extinguished during a period of

abstinence, but may be reactivated in response to re-exposure to the drug for the rest of

their lives."

 

"Once dependence has become established, it can in some cases be extremely difficult to

treat, may result in persistent withdrawal symptoms and may become a long-term or even

permanent state (Royal College of Psychiatrists 1997). In these people it may be that

continuation of the benzodiazepine prescription is felt to be appropriate for the

foreseeable future."

[[lo...]]

I think NCYW just over-reacted as often happens during withdrawal.

 

Nothing to worry about in this document.

 

LF 

[[La...]]

Yes, it's very understandable. The kind people here on BB stretched out their arms in a collective hug, though, so I think it's okay now. 

[[lo...]]

Yes, the support given to NYCW was wonderful.

 

Keep up the good work.

 

You do a great job keeping us cog fog folk informed. :thumbsup:

 

Hugs

 

LF 

 

 

 

[[Cl...]]

Yes, it's very understandable. The kind people here on BB stretched out their arms in a collective hug, though, so I think it's okay now. 

 

:thumbsup:

[[Be...]]

Those statements in documents and articles don't prove a thing, really.  Just observations.  Nothing scientific or peer review studied. 

[[Qu...]]

"Long-term use of benzodiazepines and other drugs produces chronic changes in receptor

functioning in the central nervous system and benzodiazepine receptors are not thought

to return fully to their pre-addiction state following detoxification and abstinence. As with

all addictions, psychologically conditioned effects may be extinguished during a period of

abstinence, but may be reactivated in response to re-exposure to the drug for the rest of

their lives."

 

"Once dependence has become established, it can in some cases be extremely difficult to

treat, may result in persistent withdrawal symptoms and may become a long-term or even

permanent state (Royal College of Psychiatrists 1997). In these people it may be that

continuation of the benzodiazepine prescription is felt to be appropriate for the

foreseeable future."

[[Qu...]]

"Long-term use of benzodiazepines and other drugs produces chronic changes in receptor

functioning in the central nervous system and benzodiazepine receptors are not thought

to return fully to their pre-addiction state following detoxification and abstinence. As with

all addictions, psychologically conditioned effects may be extinguished during a period of

abstinence, but may be reactivated in response to re-exposure to the drug for the rest of

their lives."

 

"Once dependence has become established, it can in some cases be extremely difficult to

treat, may result in persistent withdrawal symptoms and may become a long-term or even

permanent state (Royal College of Psychiatrists 1997). In these people it may be that

continuation of the benzodiazepine prescription is felt to be appropriate for the

foreseeable future."

 

Sounds like they MAY not really know what's up. Bless them for trying, though.

[[Te...]]

That's very old news, 1997. Info about the elasticity of the brain is starting to be researched more. The "last frontier," the brain, is just now beginning to be explored in greater depth with much, much better tools than were available back in '97.

[[La...]]

The document has a number of older references and so, of course, that's why we have to be critical readers. We should always be critical readers anyway.

 

[[Te...]]

A very good point, Lapis!

[[La...]]

Earlier this week, I posted a CBC Radio interview with a doctor who was talking about bias in medical research. There can also be issues of small sample size, short study time frame (i.e. not enough time to judge effects), and all sorts of issues that affect study outcomes. One of the benzodiazepine tapering studies I read had people decrease their medications by a high percentage each week, so the outcomes were bad. Really? What do you expect? If we only see the conclusion of the study but not the content, we don't get a full picture.

 

I really do think that BenzoBuddies provides us with a great real-life example of how benzodiazepine withdrawal can work. It shows what happens when real people are decreasing their benzo intake while offering and providing one another with online support and information. There's no way to do a lab-rat study of this process, but the Success Stories attest to the fact that people can heal. The time frames are different, of course, but the outcomes seem to be good if people stay the course. Exact percentages are NOT available! That's the way life is.

[[NY...]]

Lap, thank you for posting this document.  Unfortunately, I'm unable to read all of it but I did scan it briefly.  The information you post here and on the Dizzy Group has helped inform and educate so many of us.  Much, much appreciated. 

 

WR, I'm so sorry you had such a bad reaction to that one comment, geez, I know how easy it is when our CNS is so over sensitized, it doesn't take much to throw us off the deep end.    For what it's worth, I personally think that so called "fact" is very irresponsible.  I agree with Lapis that there are *so* many variables, that's it's near impossible to categorically state anything as "fact".  It would take a huge study and follow up until end of life really, wouldn't it, to make such a statement!?  And as LF puts it, 80% healed sounds just dandy to me!  I'm so glad you were able to reframe and see this from a different perspective.  Please continue to do whatever you can to calm and soothe yourself, and keep that hope alive!

 

Thank you abcd!  I hit a rough patch 1.5 days ago, i dunno, around then...soon after writing my looog post,  but now in 'window' again.  Soldiering on, with HOPE!  Hope and positive outlook and my gosh, a great psych (talked to me on phone for 45 minutes last night at NINE PM).  He wants me to stay away from BB : (.  He thinks it's detrimental to my hope/recovery, sees a change in me since spending so much time here (not positive).  How it came up is I continue to say, "but people on the forum said...", and he just eventually said "stop!". "I do not care what people on the forum are saying.  I care what YOU are saying, I care what I am seeing/observing/what you are experiencing. I care what your pdoc is seeing, your blood work and physical health.  I am starting to feel you are experiencing what others are b/c you're becoming lost in their stories, projecting their struggles onto yourself, that it seems to be feeding feeding fear, confusion...."  Not exact words, but the gist.  He and I are using the Ashton model, what he uses for other patients, and now is PLEADING with me to abstain from BB as part of my "treatment plan".  When I mentioned milk titration, he sighed. He asked me to go the to Ashton manual and read this excerpt with him: "Some people hit a "sticky patch" during the course of benzodiazepine withdrawal. In many cases, staying on the same dose for a longer period (not more than a few weeks) before resuming the withdrawal schedule allows them to overcome this obstacle. The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system."

 

I know BB does me some harm, and triggers me, but it also so helpful too.  I told him this, and he said you are being so cautious with ANY other triggers, why are you taking chances with this forum?  I had no answer.

 

Anyway, am going to post one more time at least b/c something odd happened after I got off call with him, and did hit "sticky patch" the day prior, why he called me so just want to know if anyone else experienced such.

 

In solidarity,

WR

 

 

 

[[La...]]

NW, you can decide how much of BB you want to take part in. It doesn't have to be all or nothing. There's a lot of good, but if you find it's too intense, then take some time off. Or just read certain parts. Or just limit yourself to a certain period of time per day/week, etc.

 

I wasn't on BB when I was tapering, so I just did it myself. It's possible to go that route too, so listen to your gut and do whatever feels good for you. Again, it doesn't have to be all or nothing.

 

I wish you well -- whatever you decide!

[[NY...]]

NW, you can decide how much of BB you want to take part in. It doesn't have to be all or nothing. There's a lot of good, but if you find it's too intense, then take some time off. Or just read certain parts. Or just limit yourself to a certain period of time per day/week, etc.

 

I wasn't on BB when I was tapering, so I just did it myself. It's possible to go that route too, so listen to your gut and do whatever feels good for you. Again, it doesn't have to be all or nothing.

 

I wish you well -- whatever you decide!

 

Yeah, I hear you.  It's just that when I read certain things, they stick in my head (a response to my post, for example).  I think it's really just info overload and for whatever reason I'm now having a hard time abstaining (from BB). I felt in control of my taper and now feel like I'm 'doing it wrong' all the time.  We are following Ashton, but so many BBs still tell me oh so loudly (TOO FAST!).  Or, by reading posts (I stick to "support during your taper", btw...this one was an accident), questioning...can I drop while still having symptoms? Will this cause me harm as it did with X, Y, Z?  Or can I have a multivitamin?  Is mouthwash really bad?  I didn't have these questions before , was just drinking coffee, tapering, having my multivitamin, using mouthwash, tapering even when I was having sx (without ANY fear of complications) - see above post re: Ashton excerpt... (was my 'between psych sessions' guide then, pre-BB input), and was fine.  Now I've cut out mouthwash, paranoid of anything I consume (like, if I order food, and it tastes too good I swear it has MSG in it, even though they tell me it doesn't).  I stopped taking a multi V.  I start second guessing myself, based on OTHER PEOPLE.  I'm not taking my own advice sometimes (everyone different, all experiences different, so trust your mind/body, find your way).  Now I have so much info in my head from BB, and so much of it is conflicting, precisely b/c of that (all different). 

 

RE: BB abstinence, I don't know.  What has been most helpful for me during taper is just trying to support others - that is my nature, my profession.  What gives me strength.  Perhaps I can continue to do that, but refrain from reading responses that prescribe confusing solutions to people often just asking for support, the kind of support that isn't solution-based, but encouraging, or offers my perspective on dealing with ups/downs of tapering...things that give me hope.

 

The problem with this is when people are simply asking for support, threads often veer into 'take tumeric, don't take tumeric, take magnesium/don't take, do V c/o, don't do V c/o, sow it down, don't hold too long, think you should try milk titration, buy a scale, etc'.  So, I read them too,  even if the original post was just someone saying 'please help, I'm losing hope now'. These are the ones I want to click on now, b/c I want to help people b/c it helps me now too, and I am trained as a social worker, and also work with people who lose hope, are in crisis, dealing with a lot of issues, and I am not doing that now while I taper, so I miss it. All the while, even  if I just stick to these posts, it's typical that confusing info will still be tossed at me (often re: tapering).

 

I am going to post something, b/c it was so curious and odd, and let's see what happens.

WR

 

 

 

 

[[La...]]

I understand, NW! As I mentioned, I wasn't on the forum during my taper. So I just used the Ashton Manual and kept going on my taper. Everyone's going through a rough time while on here, so it's a double-edged sword in terms of participating or not and what to listen to or follow. Just keep it simple. You were doing your own thing and it was working. Stick to that plan, then, and listen to your gut about the rest of the things. A bit of mouthwash or MSG won't make a big difference either way. But getting off the medication in a safe way is the most important goal. It can take a number of months....slow and steady....as calm as possible.

[[NY...]]

I understand, NW! As I mentioned, I wasn't on the forum during my taper. So I just used the Ashton Manual and kept going on my taper. Everyone's going through a rough time while on here, so it's a double-edged sword in terms of participating or not and what to listen to or follow. Just keep it simple. You were doing your own thing and it was working. Stick to that plan, then, and listen to your gut about the rest of the things. A bit of mouthwash or MSG won't make a big difference either way. But getting off the medication in a safe way is the most important goal. It can take a number of months....slow and steady....as calm as possible.

 

Thank you

 

I posted my "goodbye for now" in the "during your withdrawal" section.

 

Sending love and thanks and wishes for seedy healing (and patience) to all my BBs!

 

XOXOXOX

WR

 

[[La...]]

You're welcome! And I wish you well! You're a smart woman, so I know you'll figure out what works for you. You're on a good path and you've got an important goal to reach. You'll get there FOR SURE!

Lapis