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The Need For Research of our Condition


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Hi.  As per a request from Libertas, I am posting this here in case there is any interest.

 

I realize that this site is primarily a place of support and information for those going through the horrors of withdrawal.  But I've always felt that the benzo support world is missing a critical component.  It seems that most conditions which are widespread enough to have a support base all have some sort of advocacy or charity towards medical research for that particular condition.  The benzo support world, on the other hand, seems to be focused more on awareness and prevention (which are noble in their own right.) But the few studies done by Lader and Ashton are older and there doesn't seem to be much research going on into the mechanism of withdrawal.  As a matter of fact, we are one of the only support groups I have come across where we don't actually know what is going on with us physiologically.  To put it bluntly, we don't have any primary evidence of our condition.  We only have secondary evidence such as our symptoms and our experiences. 

 

I understand that much of this is due to the difficulty and expense of this type of research (and lack of interest).  However, there has never been a better time for this as the latest imaging technology has reached a point of evolution where we might find our answers.  To date, we have only theories as to what we are experiencing, GABAA downregulation, altered gene expression, a higher density of GABAA receptors ( a theory offered to me by an Australian researcher), HPA axis dysfunction, glutamate receptor upregulation, etc.  All of which are interesting theories but do not serve us in any real capacity.  Without knowing the exact mechanism of benzo discontinuation syndrome, we cannot make any substantial progress towards understanding it and possibly finding a treatment or cure for it. 

 

It seems to be a common acceptance in the community that there is nothing that helps withdrawal, only time.  And while in current practice that is true, I find that to be an unfortunate position theoretically.  Because that position closes the door not only on any potential current treatments but the discovery of any in the future. 

 

I feel that the proper clinical study that Colin is referring to is something that could be organized and completed.  There are enough of us going through this for the results to be statistically significant.  Perhaps fMRI or SPECT scans might give us the information we are looking for.  Maybe the condition is not that complicated.  Maybe there is already something that can treat it. 

 

The amount of time it takes to go through this is tragic.  That a person who tapered off 16 years ago is still experiencing its effects on their life today is a tragedy.  Right now people are 6, 8, 10 years off and are still incapacitated.  Yes, we are the minority, but there will be more after us.  We have to find answers to what exactly is going on with us.  This condition has existed now for 60 years and it has always been something which the existence of needs to be defended because the evidence to remove all doubt simply hasn't been produced yet.

Hello, Tooktoolong. You’ve made several excellent observations and points here.  I wonder if you would feel comfortable posting to the Chewing the Fat board with a new title to increase visibility and discussion?

 

 

 

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Thank you for re-posting this, tooktoolong.  I agree with you regarding the need for more research - not only about the mechanism of benzodiazepine discontinuation, but also about ways and means to safely discontinue each of the benzodiazepines in this class of drugs (different benzodiazepines have different properties so what works for one benzodiazepine may not work for another).  For example, there is an immediate, pressing need for research regarding the various “recipes” for preparing homemade liquids discussed in this forum. Have critical parameters (e.g., stability, potency, bioavailability, absence of harmful chemical byproducts) been confirmed by physical, chemical, and microbiological assay of samples of the final products?

 

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A search for a cure is an acknowledgement that the injury exists. The pharmaceutical industry will do everything possible to make sure that this does not happen. Benzos are no longer profitable, as they are now generic. The collateral damage left in the wake of decades of improper prescribing, is, however, staggering. Acknowledgement of our existence would lead to a situation similar to what has occurred with opioids. The vast amount of research dollars at the disposal of these corporations will be used to counter any findings made by the smaller, government funded studies. Big Pharma has great input in also determining what studies are published by leading journals. It is not in their interest for any “evidence based” information to see the light of day. That is why our doctors are able to dismiss us. They have never read anything about that stuff, right? No evidence means nothing to take to court but sick people who are easy to dismiss. But, you are right. There could be a way to help us. But we are invisible. Did you know about the people who were here before you became one of them? I didn’t. Esperanza
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Yes, what Esperanza said.

Never in a million years would imagine I'd be in this situation and that it has no solution for some of us it seems.

 

All I can say is had no mental illness pre taking AD, antibiotic and cutting benzo.  Now I feel have lost my mind half the time.  It is hard to advocate for anything this disabled.

 

Are we such a tiny minority no dr. wants to take this on or knows of us?

 

 

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I do not believe we are a tiny minority. When I see a group half the size as B.B. saying they took a Benzo for years and years and had no problem after stopping, then I might change my mind. My doctor gave me that line. But, he later admitted that the only people he ever tapered off were inpatients in the detox unit during his residency. Sure, they left the unit Benzo free. But, he has no idea what happened after that. How many long term users even try to get off? How many even think they should? How many try and get hit and think they really need the stuff? How many can endure the misery of withdrawal? I would not be going through this, myself, if I was not convinced that I had no other option.      Assuming, however, that most people do not have problems withdrawing, is that justification for continuing improper prescribing, in light of the hundreds of thousands of us who have been seriously injured by these drugs? Is insomnia or anxiety worth this risk? The medical evidence does not support long term efficacy of Benzos in treatment of either of these. It seems like we are the collateral damage from a war that should never been fought, in the first place. Esperanza
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We are it. We are the people that know. That care. One of the problems with therapies and cures is that they have to wonder, is there a market here What WOULDN't you pay to have this stop? I would give ever penny I own.
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How many of us are there on BB??

 

Those who had no trouble would not be posting, probably, as nothing to post about.

 

Yes, I would cut off an arm to not have this.  Much easier to live without an arm.  I'd pay any amount to get past this.

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