What happened to Benzodiazepine Information Coalition?????

[[Me...]]

talk about a complete reversal in messaging

 

https://www.benzoinfo.com/2019/11/11/yes-benzos-help-some-that-doesnt-justify-ignoring-patient-safety/

 

Am I just not understanding this? I'm seeing more and more support for staying on benzodiazepines in places that used to be about getting off benzos. I've even seen it on this forum where people are saying I want to stay on benzos. Well, if you want to stay on them, why on earth would you be on benzobuddies?  This is one of the few places that recognizes the harm caused by benzos and I don't think we need pharma apologists. Let's face it, pharma is more than adequately represented in other places.

 

Very few people end up here because they were taking drugs illegally. They were prescribed by a medical professional.

 

 

[[to...]]

I think they are trying to head off (by not outwardly being totally anti-benzo) what many people fear as the result of recent publicity (like Lisa Ling) about the dangers of Benzodiazepines.....  a rush by prescribers to arbitrarily  start cutting off patients currently on benzos because of all the publicity..... like they are doing with opioids .  Kaiser Permanete is already giving patients on benzos 4 months to get off.

 

The rest of the article qualifies what appears to be a change in position on the part of BIC.

 

I wish I was given informed consent and a prescription for no more than 2 weeks as BIC advocates.

[[Fl...]]

If you think this is a "pharma apologist" article I would encourage you to read it again.

[[de...]]

I didn't read it as "pharma apologist".  Seemed balanced to me.

 

Dee

[[Li...]]

I think they are trying to head off (by not outwardly being totally anti-benzo) what many people fear as the result of recent publicity (like Lisa Ling) about the dangers of Benzodiazepines.....  a rush by prescribers to arbitrarily  start cutting off patients currently on benzos because of all the publicity..... like they are doing with opioids .  Kaiser Permanete is already giving patients on benzos 4 months to get off.

 

The rest of the article qualifies what appears to be a change in position on the part of BIC.

 

I wish I was given informed consent and a prescription for no more than 2 weeks as BIC advocates.

 

Oh my. Has this been announced somewhere?  Does this apply to all of Kaiser Permanente or perhaps just one of its regional operating subsidiaries (e.g. the Kaiser Foundation Health Plan of Washington)?

[[Lo...]]

Honestly, I don't see any fundamental changes in BIC's position. The way I read the article is that JC really wants to drive the point across that the decision to taper as well as how fast/slow one should taper should be individual and left to the patient, not the doctor, not family members, not friends, not benzo buddies. not BIC. I mean, how would you feel if your doctor told you, "Oh, I read all this recent work on the dangers of benzos. I think your taper is nothing more than just prolonging the agony, so lets just stop with your prescription right now"? I doubt you'd feel good about this. And this is the exact situation that BIC is trying to prevent from happening to an increasing number of people.

[[to...]]

I think they are trying to head off (by not outwardly being totally anti-benzo) what many people fear as the result of recent publicity (like Lisa Ling) about the dangers of Benzodiazepines.....  a rush by prescribers to arbitrarily  start cutting off patients currently on benzos because of all the publicity..... like they are doing with opioids .  Kaiser Permanete is already giving patients on benzos 4 months to get off.

 

The rest of the article qualifies what appears to be a change in position on the part of BIC.

 

I wish I was given informed consent and a prescription for no more than 2 weeks as BIC advocates.

 

Oh my. Has this been announced somewhere?  Does this apply to all of Kaiser Permanente or perhaps just one of its regional operating subsidiaries (e.g. the Kaiser Foundation Health Plan of Washington)?

 

 

Not to alarm..... I have no direct knowledge of this..... just have seen a couple of Buddies post that

Kaiser (not sure which subsidiaries)  have "new guidelines"  on benzos. If your doctor is working with you on tapering, I'm, sure you will be OK.

[[Li...]]

I think they are trying to head off (by not outwardly being totally anti-benzo) what many people fear as the result of recent publicity (like Lisa Ling) about the dangers of Benzodiazepines.....  a rush by prescribers to arbitrarily  start cutting off patients currently on benzos because of all the publicity..... like they are doing with opioids .  Kaiser Permanete is already giving patients on benzos 4 months to get off.

 

The rest of the article qualifies what appears to be a change in position on the part of BIC.

 

I wish I was given informed consent and a prescription for no more than 2 weeks as BIC advocates.

 

Oh my. Has this been announced somewhere?  Does this apply to all of Kaiser Permanente or perhaps just one of its regional operating subsidiaries (e.g. the Kaiser Foundation Health Plan of Washington)?

 

 

Not to alarm..... I have no direct knowledge of this..... just have seen a couple of Buddies post that

Kaiser (not sure which subsidiaries)  have "new guidelines"  on benzos. If your doctor is working with you on tapering, I'm, sure you will be OK.

 

Whew! That’s a relief.  It sounds like we’ve read the same posts.  I believe the Buddies are referring to a guideline from one of the regional operating subsidiaries of Kaiser Permanente (KP).  I have found no evidence that the guideline has been adopted across the entire KP organization (which is a good thing b/c there are multiple issues with it, for example, Urine Drug Screening for patients who have been identified as “high risk” - a category that includes all patients who are 65 and older).

 

In case you or others are interested in learning more, the guideline was prepared by the Kaiser Foundation Health Plan of Washington (as in the state of Washington, not Washington DC).  It is available at:

 

Benzodiazepine and Z-Drug Safety Guideline

[nobbc]https://wa.kaiserpermanente.org/static/pdf/public/guidelines/benzo-zdrug.pdf[/nobbc]

[[Me...]]

any time that opioids and benzos are mentioned in the same sentence is a problem because it lumps two separate problems together and "balanced" is an overused and misused term - it does not mean giving equal time to the opposite opinion whether that opinion has any validity.

 

Expect to see other psych drugs added to that list in the future.

 

Benzos have been misprescibed for decades. Doctors and medical corporations pretending they are shocked and surprised by the problems they have caused is disingenuous at best and criminal at worst.

[[Te...]]

Honestly, I don't see any fundamental changes in BIC's position. The way I read the article is that JC really wants to drive the point across that the decision to taper as well as how fast/slow one should taper should be individual and left to the patient, not the doctor, not family members, not friends, not benzo buddies. not BIC. I mean, how would you feel if your doctor told you, "Oh, I read all this recent work on the dangers of benzos. I think your taper is nothing more than just prolonging the agony, so lets just stop with your prescription right now"? I doubt you'd feel good about this. And this is the exact situation that BIC is trying to prevent from happening to an increasing number of people.

 

I absolutely agree with this.

 

I found it an informative article. Some people feel the need to remain on benzos, but it was strongly stressed in the article to have informed consent and for doctors to be knowledgeable about benzos instead of creating worse problems for their patients due to cluelessness on their part.

[[Qu...]]

Some reactions to "The Benzo Crisis" have been extreme. You can see this clearly on other sites like twitter. People are terrified that they are going to be ripped off their meds. There is some justification for that concern, since we see it happen every day. Many members are here because our doctors took us off these meds without our choice or with ignorant methods.

 

What I believe the blog post articulated, is that part of the message of BIC remains that these choices should be up to the individual and no one should be forced to c/t or rapid taper. Some patients are becoming infuriated at Lisa Ling, BIC, and those who advocate against prescribed harm because they have a misconception that the above named people and organizations believe benzos should be immediately outlawed and everyone, regardless of their situation, should stop taking benzos immediately. And so instead of being united in demands for research, informed consent, and knowledgable doctors who both know the dangers of these meds and also how to safely taper their patients, every online discussion off of BB ends up being a debate between people who say 'these meds work for me why are you trying to take them away,' and prescribed harm advocates saying, 'that's not at all what we are saying, we want there to be help for you if your drugs should stop working, and we want for everyone to know the risks before they begin." That is where the oxygen is. That is what is filling the space that should be filled with questioning of Pharma, of educating doctors, and of humane rules being put into place that govern the prescribing and tapering of these medications.

 

But if people start from a position where they think an organization like BIC is actively working to have their medication taken from them then there can be no common cause. People have seen the disaster that has accompanied the reaction to the opioid crisis, where patients have been injured once again out of political and medical ignorance.  One reason opioids and benzos are being used in the same sentence is because veterans are being given the choice to remain on either their opioid or their benzo. So they are being forced to quit one or the other. It is a very real fear and they are not separate problems for those patients.

 

Thus, the blog reads to me as an attempt to clearly state BIC's goals, to demonstrate to scared patients that there is a group that understands their concerns, and that continues the work of empowering patients over the whims of their doctors, the indifference of the FDA, and the avarice of Pharma.

 

quiet

[[Aj...]]

I think it is important to say that for some people it is not the right thing to get off of them

 

I should never have tried to stop diazepam which I was on the same low dose of for 20 years for muscle spasm from spinal injury and surgery.

 

WD is literally crushing my spine and I am now paradoxical to all meds.

 

I had no interdose WD or to,ere veg on the diazepam.

 

I know ppl in dystonia groups who only get relief from Clonazepam some of whom have been on it for 40 years without problems.

[[Me...]]

From what people on this forum are saying, I don't see anyone as having much of a choice about quitting benzos. Prescriptions are being limited and in some cases denied so taking yourself off while you still have a choice as to how you come off of benzos is better than being ripped off of them.

 

watch this interview with professor Ashton for some good info

 

 

[[Te...]]

Well, a very good reason BIC is in existence is for knowledge of the importance of tapering slowly. Certainly tapering off according to the patient's wishes is a huge part of that. If I were still tapering, I would want every doctor to know about what BIC has said about this topic. It helps, too, to know that there are reputable doctors on BIC's board.

 

Letting doctors know that seizures or even death can result from being ripped off benzos is of prime importance. This can't be downplayed by doctors. I can only hope that doctors have some sort of knowledge about benzos to realize these facts. I would certainly highlight the parts of articles from BIC that explain this and tell them that I would be very frightened of being ripped off benzos or forced to do a rapid taper.

[[to...]]

Some reactions to "The Benzo Crisis" have been extreme. You can see this clearly on other sites like twitter. People are terrified that they are going to be ripped off their meds. There is some justification for that concern, since we see it happen every day. Many members are here because our doctors took us off these meds without our choice or with ignorant methods.

 

What I believe the blog post articulated, is that part of the message of BIC remains that these choices should be up to the individual and no one should be forced to c/t or rapid taper. Some patients are becoming infuriated at Lisa Ling, BIC, and those who advocate against prescribed harm because they have a misconception that the above named people and organizations believe benzos should be immediately outlawed and everyone, regardless of their situation, should stop taking benzos immediately. And so instead of being united in demands for research, informed consent, and knowledgable doctors who both know the dangers of these meds and also how to safely taper their patients, every online discussion off of BB ends up being a debate between people who say 'these meds work for me why are you trying to take them away,' and prescribed harm advocates saying, 'that's not at all what we are saying, we want there to be help for you if your drugs should stop working, and we want for everyone to know the risks before they begin." That is where the oxygen is. That is what is filling the space that should be filled with questioning of Pharma, of educating doctors, and of humane rules being put into place that govern the prescribing and tapering of these medications.

 

But if people start from a position where they think an organization like BIC is actively working to have their medication taken from them then there can be no common cause. People have seen the disaster that has accompanied the reaction to the opioid crisis, where patients have been injured once again out of political and medical ignorance.  One reason opioids and benzos are being used in the same sentence is because veterans are being given the choice to remain on either their opioid or their benzo. So they are being forced to quit one or the other. It is a very real fear and they are not separate problems for those patients.

 

Thus, the blog reads to me as an attempt to clearly state BIC's goals, to demonstrate to scared patients that there is a group that understands their concerns, and that continues the work of empowering patients over the whims of their doctors, the indifference of the FDA, and the avarice of Pharma.

 

quiet

 

This is an excellent summation of the situation.  Remember that there are millions of people taking benzos every day and only a few thousand of us.  So the stories of benzos saving people's lives will far outnumber stories from people like us.  There's a ton of people who stay on them for life and never even think of coming off.  Documentaries like Lisa Ling's scare those people even though it's simply telling the truth.  Those people don't want to hear it.  It scares them and they are willing to attack us and our position in response to that fear. 

[[Ba...]]

I think it is important to say that for some people it is not the right thing to get off of them

 

I should never have tried to stop diazepam which I was on the same low dose of for 20 years for muscle spasm from spinal injury and surgery.

 

WD is literally crushing my spine and I am now paradoxical to all meds.

 

I had no interdose WD or to,ere veg on the diazepam.

 

I know ppl in dystonia groups who only get relief from Clonazepam some of whom have been on it for 40 years without problems.

 

AJusta,  had you not gotten off the diazepam would you have been better?  Or was the tapering down what made you so bad, do you think?

 

I agree these groups need a warning that going down or off can also cause problems and if you are stable on what you're on, have never had an addictive personality, sometimes it is best to leave well enough alone.

[[Fi...]]

I think it is important to say that for some people it is not the right thing to get off of them

 

I should never have tried to stop diazepam which I was on the same low dose of for 20 years for muscle spasm from spinal injury and surgery.

 

WD is literally crushing my spine and I am now paradoxical to all meds.

 

I had no interdose WD or to,ere veg on the diazepam.

 

I know ppl in dystonia groups who only get relief from Clonazepam some of whom have been on it for 40 years without problems.

 

AJusta,  had you not gotten off the diazepam would you have been better?  Or was the tapering down what made you so bad, do you think?

 

I agree these groups need a warning that going down or off can also cause problems and if you are stable on what you're on, have never had an addictive personality, sometimes it is best to leave well enough alone.

 

[[Do...]]

I don't think patients should be forced off of benzos.  I had severe dystonia symptoms from klonopin withdrawal, and would never wish that on anyone.  klonopin and benzos are one of the few meds that can treat dystonia.  (dystonia is a movement disorder where your body twists and contorts in unnatural ways).  Little kids are screaming in pain as their feet bend backwards, and this can go on for several hours at a time, for some it is non-stop. Benzos should ALWAYS be allowed for that reason, and I went through absolute hell from my prescribed klonopin.  That being said, as much as I am against klonopin, had I continued with the severe dystonia movements, I would have gone back on.  You are literally trapped in bed with your body twisting painfully in strange ways.

 

There may also be people with anxiety who are stuck in that fight or flight without benzos.  Just like pain meds, some people are helped, or are willing to deal with the risks.  What I think is most important is making people aware of the risks before they start the medicine.  But I would never want to see a person with bad dystonia from accessing benzos.  Basically, think of the pain that shoots through your foot when you smash it against something and bend in backwards until it bruised.  That is what dystonia can do, but it keeps it bent for hours at a time.  I had times where my legs looked like someone beat the crap out of me from how bad the spasms were.  For someone who suffers this on a daily basis, benzos should be available.

[[Ma...]]

On 23/11/2019 at 05:52, [[D...] said:

I don't think patients should be forced off of benzos.  I had severe dystonia symptoms from klonopin withdrawal, and would never wish that on anyone.  klonopin and benzos are one of the few meds that can treat dystonia.  (dystonia is a movement disorder where your body twists and contorts in unnatural ways).  Little kids are screaming in pain as their feet bend backwards, and this can go on for several hours at a time, for some it is non-stop. Benzos should ALWAYS be allowed for that reason, and I went through absolute hell from my prescribed klonopin.  That being said, as much as I am against klonopin, had I continued with the severe dystonia movements, I would have gone back on.  You are literally trapped in bed with your body twisting painfully in strange ways.

There may also be people with anxiety who are stuck in that fight or flight without benzos.  Just like pain meds, some people are helped, or are willing to deal with the risks.  What I think is most important is making people aware of the risks before they start the medicine.  But I would never want to see a person with bad dystonia from accessing benzos.  Basically, think of the pain that shoots through your foot when you smash it against something and bend in backwards until it bruised.  That is what dystonia can do, but it keeps it bent for hours at a time.  I had times where my legs looked like someone beat the crap out of me from how bad the spasms were.  For someone who suffers this on a daily basis, benzos should be available.

Hi

i experience severe Dystonia my body is chronically contorted in an s shape my spine pushing my bones out swayback from pulling mouth forced open pressure very extreme. I cannot do anything. I have this since my CT and reinstated cause my akathasis was life threatening. After the reinstatement he drug turned paradoxal to me. 
the reinstatement and taper cured my akathasis in a couple of months but Dystonia is worse .
I would like to ask you when it got better. 
I am 9 months off and my dystonie is now worsening . I turn into stone