How to Save Ourselves

[[Ba...]]

thanks Quiet for posting your convo. 

Did the pharmacist guy have much to say or they just don't know?  People take various combinations of things to get off ...  some are helped some not.

 

i'll try to reach out as well when I can get organized.

 

I think a lot of us had trauma early on- i did.  So that trauma (complex)  and then in withdrawal.

 

I think they need to realize many of us so sick we can't even get to drs. 

We need people to come check on us, the way those on medical (welfare) get home aides.  We also nee a hotline.  Yes, and  ressiential place we could go to. 

Folks who are bedidden or agoaphobi are not going to goin to drs offices, let alone keeping up with other help probs if surviving from hour to hour is a problem...

[[Qu...]]

This!:

 

http://www.benzobuddies.org/forum/index.php?topic=229480.0

[[Qu...]]

BarbaraAve: I’m sorry, my poor brain isn’t quite sure what your initial question is. Can you clarify it for me?

 

And I completely agree that there should be at home visits. Doctors use to do this all the time in the old days. Teleconferencing is one way to handle this. The doctor I’m seeing next week works that way. That assumes each patient has a relatively good computer/phone and a stable internet connection. But it’s something

[[Ch...]]

My doctor has a patient portal. I can leave a msg and she answers within a few hours.

[[or...]]

Mine, too, Challis. We can get a lot of minor things attended to that way . . . often without an office visit.

 

Katz

[[Cu...]]

This!:

 

http://www.benzobuddies.org/forum/index.php?topic=229480.0

This is great.  Unfortunate, though, that I still only see anything addressing this worldwide crisis here on benzobuddies, or if I do online research.  Nothing  via tv & advertising to educate.

 

Still feel the medical professionals, themselves, need to be further educated.  They've been prescribing these meds for at least 25 years, now...longer, counting valium & what's occurring now is that doctors' are just stopping prescriptions.  So, news of the dangers of benzo's are now known, but not how to responsibly & compassionately taper their patients off.  This is just cold-blooded treatment for the benzo-dependents that doctors & pharmaceuticals have made created.  I would love to actually see a physician who is knowledgable & one who I feel I'd be able to trust, after feeling betrayed by the doctor who both put me on ativan, prescribed @ a high dosage for over a decade & then gave 1 extra refill w/news of stopping prescribing. - I feel, b/c he must have been questioned by new uber-group who'd absorbed his smaller group practice. - The only doctor I've seen in the last 3 years is ER doctor in April, so that was not at all a comprehensive medical visit & I did not speak of benzo at all.  I've seen far too many posts here that any sxs are not recognized by the medical professions as being benzo or benzo w/d-related. 

 

I'm tired of "treating myself" & finding my only reliable sources on this travesty being through an online community of strangers w/out medical experience; only the same, or similar, dire circumstances.  Let's be honest: That's a scary situation.  I'm in constant pain..  No feeling better, nor even leveling off; rather, worsening.  What's additionally scary is that throughout searches here, I am not finding anyone else w/worsening pain.  And, then, again, that hopeless feeling of "So what, even if I do find a compatriot in this awful battle, w/that particular similarity; unless it's someone who's been in the medical field, it's still an online stranger".  And, this is the "best there is".  This is gross negligence on the part of doctors.

[[Qu...]]

There's this:

 

For those that don't know, there will be an hour long special called, "The Benzo Crisis" on a show called "This is Life" with Lisa Ling. It will air Oct 6th, (I keep reading different times, the webpage says 10:00pm, but I've also seen 9). BBs who have seen a leaked version are rapturous about it's depiction of our situation. I hope everyone watches it. If you think it will be to triggering, put it on the tv and then go do something else. They keep track of these things and will only cover a topic if people watch. Tell your family; tell you friends. Facebook it. Twitter it. Whatever.

 

http://www.benzobuddies.org/forum/index.php?topic=228534.msg2936750#msg2936750

 

 

[[Cu...]]

There's this:

 

For those that don't know, there will be an hour long special called, "The Benzo Crisis" on a show called "This is Life" with Lisa Ling. It will air Oct 6th, (I keep reading different times, the webpage says 10:00pm, but I've also seen 9). BBs who have seen a leaked version are rapturous about it's depiction of our situation. I hope everyone watches it. If you think it will be to triggering, put it on the tv and then go do something else. They keep track of these things and will only cover a topic if people watch. Tell your family; tell you friends. Facebook it. Twitter it. Whatever.

 

http://www.benzobuddies.org/forum/index.php?topic=228534.msg2936750#msg2936750

 

Thank You for posting this w/link.  I knew nothing about this.  Did click link & plan to watch. This is important. 

[[mo...]]

I'm not rapturous about it, but I am watching and recording. I'm telling the few in my life that are still with me, and I've mentioned it at the only 12 step meeting I've been able to attend for some time. I don't understand what there is to be so excited about other than I see it as a start... I'm curious to see what other's think who also aren't overtaken.

 

I am hoping so much that "As Prescribed" does our situation justice and that it comes out soon.

 

I also hope that the coming symposiums are increasingly better at covering the actual extent and severity of our situation. I just personally think that "This is Life: The Benzo Crisis" was not near enough of anything for me to be satisfied.

[[Do...]]

  Mon Pilote….Are you saying you watched this already?  If so..can ya link us?

Otherwise, I will see it when I see it.  I expect very little.  Probably won't see medical science figure this shit out in my life time.  Would be nice for a Dr. to at least believe me!  That might happen. (in my life time.)

In the mean time, we are all we have.  I am grateful for this.

[[mo...]]

DoveLuv,

 

The link got pulled because it was a leak. I don't know who would have leaked it--and I think that was a good idea and that it was brave. I don't know how anyone could have possibly done it and I doubt that the less interested pounced and sat watching. Those of us interested and fortunate to have had the opportunity I am sure will watch again and record if possible.

 

Sharing that it will air October 6th on CNN, is good, but I don't do social media apart from the interactions I have on BB. So I fully agree, we are all we have and I too am grateful we have this much. Also grateful for any and all work that has been achieved thus far or is about to be released or discussed at an upcoming symposium. I know there are some more of these scheduled because I saw someone share that somewhere here in one of the forum sections.

 

I wonder that they will ever fully understand in my own lifetime, and same with you again: I have hope that we could at least recieve aknowledgement and eventually some form (or forms) of better support. I really don't know but I just keep hoping along with everyone else here.

[[Qu...]]

It seems like the primary goal of most of the work is to educate doctors and patients so that this doesn't happen MORE, and eventually, at all.

 

I mean, I guess someone could come along and discover some anxiolytic (in my non-science mind I think anxiety is the main drive of all the other symptoms, at least in their inception) that would enable us to taper off this stuff in a safe way. But that seems like a fantasy to me right now. I don't even think we're on 99.9999% of researchers radars, and if no one is looking...

 

It's weird though. Given the overlap with autism, Alzheimers, GABA etc. I wonder if possible treatments aren't already tucked away in someone's desk, they just haven't thought to apply them to this situation, since, as we all know, NOTHING IS HAPPENING OTHER THAN UNDERLYING CONDITIONS.

 

 

[[Cu...]]

It seems like the primary goal of most of the work is to educate doctors and patients so that this doesn't happen MORE, and eventually, at all.

 

I mean, I guess someone could come along and discover some anxiolytic (in my non-science mind I think anxiety is the main drive of all the other symptoms, at least in their inception) that would enable us to taper off this stuff in a safe way. But that seems like a fantasy to me right now. I don't even think we're on 99.9999% of researchers radars, and if no one is looking...

 

It's weird though. Given the overlap with autism, Alzheimers, GABA etc. I wonder if possible treatments aren't already tucked away in someone's desk, they just haven't thought to apply them to this situation, since, as we all know, NOTHING IS HAPPENING OTHER THAN UNDERLYING CONDITIONS.

 

Beg to differ: anxiety main drive.  Pain management, too.  6 years prior to being prescribed ativan, was prescribed klonopin for fibrymyalgia pain management.  At that time, had the presence of mind to look it up & threw away prescription; instead, in addition to lidocaine trigger point injections combined w/physical therapy, took arthritis pool exercise classes.  Unfortunately, when I'd developed something else w/chronic pain some years later, @ that time, more severe; just took the ativan/no questions asked/no research conducted.  If I'd had any idea was in same class of medicines, would've thrown that out, too.  I've read others' here being prescribed for pain management, too; not only fibro: also, after surgeries, usually something ortho. 

 

Perhaps why my worst w/d sxs are pain, as the ativan either relaxed muscles &/or trigger points or somehow tricked mind that no pain existed.  One reason why I was so concerned @ outset of w/d knowing it was prescrived for pain mgmt. which it obviously did.  I just resigned myself.  However, I'd had no idea of just how severe the pain would be or how long lasting, as mine is not only not leveling off, but worsening each month & it's ever present.  I can't take NSAID's b/c I had an ulcer.  So, I think, did it help me to lead a normal, somewhat pain-free existence for the years I was taking? & will I live long enough to experience any amount of pain-free life, again?  Unknown.  But, I don't dwell on these questions...there's no peace to be found therein.  I've learned that, unfortunately, thinking is the enemy...turn off thoughts/distract.  It's not a pleasant existence, by any means.  All it is, for me, is suffering. 

[[Fl...]]

I mean, I guess someone could come along and discover some anxiolytic (in my non-science mind I think anxiety is the main drive of all the other symptoms, at least in their inception) that would enable us to taper off this stuff in a safe way. But that seems like a fantasy to me right now. I don't even think we're on 99.9999% of researchers radars, and if no one is looking...

 

Most of us are in this mess because we took a supposedly safe pharmaceutical drug. You would trust big pharma if they told you that they had the perfect remedy for the drugs they already poisoned you with? I wouldn't. At least not until many, many years had passed and the drug had a track record with PATIENTS as being safe.

[[Qu...]]

Good point. I just meant that I don't think that moments like these are going to provide some kind of quick relief (except maybe psychological) for the currently injured. It's not realistic, but I wrote it down because it is an unrealistic hope that lurks in my heart and I guess I'm checking myself.

 

Honest truth: I find myself thinking that someone will see this and then something will happen and we will all be cured next week. That is my desperation latching on to anything it can find. Now that is stupid and will lead to disappointment. I want to just enjoy this and be happy for what it can do. And it is a great thing and it's going to keep some people from getting hurt and it's going to help some people talk to their families and friends and be believed. And it may even have a positive effect on some doctors. If those things happen then that's a lot to accomplish with an hour of television.

 

Regardless, what we can do is amplify this message in every manner at our disposal in this crucial window.

[[Do...]]

DoveLuv,

 

The link got pulled because it was a leak. I don't know who would have leaked it--and I think that was a good idea and that it was brave. I don't know how anyone could have possibly done it and I doubt that the less interested pounced and sat watching. Those of us interested and fortunate to have had the opportunity I am sure will watch again and record if possible.

 

Sharing that it will air October 6th on CNN, is good, but I don't do social media apart from the interactions I have on BB. So I fully agree, we are all we have and I too am grateful we have this much. Also grateful for any and all work that has been achieved thus far or is about to be released or discussed at an upcoming symposium. I know there are some more of these scheduled because Quietquiet shared it somewhere here in one of the forum sections.

 

I wonder that they will ever fully understand in my own lifetime, and same with you again: I have hope that we could at least recieve aknowledgement and eventually some form (or forms) of better support. I really don't know but I just keep hoping along with everyone else here.

 

I hear ya Mon pilote...Just the thought of receiving validation and support from a community, friends, family ect'... is an overwhelming thought to me.  This has been a brutally isolating process.  I just can't let myself hope too much.  Sad really.  But we are going to make it somehow.  I do believe that we can effect how many have to come after us.  I hope they have support and science helping them through it!  Or better yet...never prescribing it to begin with.  Peace to you

[[Qu...]]

I’d like to see one (or more) of the candidates for president (and down ballot races) speak to the issue of harm done from psychiatric medications and the issue of informed consent. Seems like a perfect way to set yourself apart (or better yet, to come to agreement) with healthcare as a central message of one of the parties.

 

Can you imagine a moderator giving someone who seems like they might be informed on this issue (Warren? She’s got a plan!, though I don’t think for this?) on a national stage?

[[Ma...]]

I don't really even know how to explain this, but to me, catching newbies before they begin Withdrawal clueless, and get screwed up right away.  Get them started on a safe taper to begin with, but how do we find them before they go too fast or cut too much.  It's a shame BB can't advertise 

[[Do...]]

Yes Mary...I have thought about this.  The real truth of these drugs is hidden.  At least is was for me and I trusted the main stream medical information.  This came from medical websites and my Dr's.  I ended up trusting a doctor and went through a dangerous c/t.  For me at the time, I avoided anything but medical experts or the limited research that indicated a month or so of recovery time.  If BB would of popped up along with the credible ashton manual, I might of taken a different path.  Most likely.

 

I found the Ashton manual a few weeks after c/t.  Her work directed me to BB.  This was all ass-backwards.  How can we turn this around? 

 

Chime in Quiet....or anyone?  How do we elevate the Ashton Manual to a reliable, credible medical benzo resource?  This needs to be taught in medical schools and pharmacology.  It's the most complete work we have at this time.  Certainly does need an update and additional research.

[[Ma...]]

Yes Mary...I have thought about this.  The real truth of these drugs is hidden.  At least is was for me and I trusted the main stream medical information.  This came from medical websites and my Dr's.  I ended up trusting a doctor and went through a dangerous c/t.  For me at the time, I avoided anything but medical experts or the limited research that indicated a month or so of recovery time.  If BB would of popped up along with the credible ashton manual, I might of taken a different path.  Most likely.

 

I found the Ashton manual a few weeks after c/t.  Her work directed me to BB.  This was all ass-backwards.  How can we turn this around? 

 

Chime in Quiet....or anyone?  How do we elevate the Ashton Manual to a reliable, credible medical benzo resource?  This needs to be taught in medical schools and pharmacology.  It's the most complete work we have at this time.  Certainly does need an update and additional research.

 

Exactly Dovelove, it's ass backwards, perfect description!!

[[Qu...]]

I have a superficial answer. The website it is hosted at has all the fonts and weird artistic choices from decades past. It looks antiquated no one who looked at it would suggest that this was the best most comprehensive source available on a topic for the layperson (sadly, they’d be wrong).

 

There is a big hang up over updating it because of issues that I don’t know enough to speak to but an admin or Colin would. It seems like a stumbling block that either needs to be addressed, or a new manual needs to be written? I don’t know. It’s a wonderful document, and it’s even engagingly written, but it has key areas that many people agree need work. The tables aren’t for everyone. She suggests alcohol use is ok in moderation (but now would change that). It’s also very cheerful, which is both good and bad. I’m at a loss as to what one does about the legal aspects of this, as I said.

 

But even with its faults, as you say, it’s the best document we have. I wish That we had a larger social media presence, where these materials could be disseminated  more rapidly. And of course, every doctor should have copies for their patients. Frankly, I think it should be required by law for anyone being given a benzo prescription to be given a copy.

 

[[Do...]]

Ya Quiet, When it is required by law to disseminate info on benzos, it will most likely be because of a class action or somebody sues the hell outa a few docs and pharma.  We know how this goes.  Usually, a lot of people have to die.  God, I am sounding morbid. 

 

I better head to 'off topic or accentuate the positive.'  Geez

[[Ho...]]

i saw this comment on youtube :

 

  "I fear Lisa Ling might cause much more harm than accomplish any help, even if she means well, and I don't know that either. But if she puts Benzodiazepines in the same thrall as the Opiate epidemic, and the govt. starts clamping down and cutting people off, which they have done with many opioids, you shall see a wave of insanity, broken families, a terrifying rise in suicides, and possibly the biggest return to muggings and theft and home invasion America has ever witnessed. No drug withdrawal on Earth compares to Benzo's, and I personally have been called about suicides of people I knew who were cut off too fast. I am truly afraid of this episode."

 

i am worried about this too.

[[co...]]

It's already happening.

 

The new clinic I go to after my move has instituted a benzo policy where they try to wean long term patients from their drug.

 

I've told my 'gatekeeper' my sad tale, and changes were instituted soon after...I don't think I'm the cause, but I might have re-inforced the sentiment. 

 

I've warned her about jerking people off too quickly; I tapered (dry-cut) for a year and a half, and I still got slammed.

 

I feel a great deal of sympathy for pain patients.  So much suffering. 

[[Te...]]

But it was stressed how important it is to go very slowly with tapering. Didn't it also talk about how one should not go to a detox center? I forget, but I hope it said something about that. And look at the poor unfortunate guy in the beginning of the video who had ct'd a number of drugs. Wouldn't that teach the doctors something???

 

What about the woman doing micro-tapering to cut down on symptoms??? Hadn't she previously gone to a detox center or had a fast taper and learned a really tough lesson?

 

If doctors see this video and then try to just cut their patients off benzos, they've got to have a screw loose - or more than one. Several.