How to Save Ourselves

[[Su...]]

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.

 

My wife’s nurse practitioner recently gained two new long term patients in their 80’s who were cut cold turkey from their prescribed benzodiazepines and suffering horribly.  This is the first time such a thing has happened in her long career.  She reinstated them on their benzos so they could live out their lives in peace.  This is the collateral damage happening right now.  Intractable pain patients are being cut off cold turkey from benzos and being harmed.  I’m worried, too.  I have zero faith that the medical community can handle this.

[[Qu...]]

For the first time in my life I’ve been using Twitter. It’s a weird place. I’ve been finding people who are complaining of benzo withdrawal and starting to direct them to the Ashton Manual and BBs.

 

I’ve also had a couple of exchanges with Lisa Ling. There is not one single researcher, academic, and now television celebrity who is working on this that I have reached out to with a legitimate question and not had a wonderful exchange. As this thing ramps up next week I encourage anyone who can to spread the message. Send word by whatever method to your representatives, people you like who think about health issues, all your friends in med school, whoever! I know this sounds dopey, but imagine if A few members of the US Senate found out that the medicine they are on is potentially toxic and causing them pain? Next week is the most important week in the history of benzo coverage. Don’t let this fall through our fingers or distract ourselves with infighting. What happens on BB, often enough, stays on BB. This is one time when we want our energy directed outward.

 

If anyone has more specific suggestions on how to do that most effectively that would be awesome. For instance, where to link to. Right now the show’s homepage is on a different topic (porn), but I guess that will change soon and we can share direct links to it?

[[Te...]]

I know a soon-to-be 100-year-old whose doctor cut off her Valium. He told her she doesn't need to be taking it anymore. She ended up in the hospital. She'd had bad insomnia and started using Nyquil. Either she used too much or she's allergic. Her bp was 250, and she doesn't even have high bp. She takes no bp pills.

 

Her son is supplying her with Valium now. He's a dentist and has Valium for patients with anxiety.

 

Yes, it's utterly hideous what doctors are doing to older patients. Why pick on them, for god's sake. They must indeed have screws loose to do such a thing.

 

I can only hope that this video will shed light on the fact that patients CANNOT be ct'd or fast-tapered, that they must be at the helm of their own tapers, not the befuddled doctors who can certainly mess everything up through ignorance. 

[[Cu...]]

This in in reply to Libertas' idea, stated here:

 

R1: (idea re: what would help)

 

Individuals withdrawing from benzodiazepines need access to formulations of their particular benzodiazepine that (a) allow them to make gradual and accurate reductions in their dose and (b) have been tested for safety and efficacy by a suitably qualified entity (e.g. a school of pharmacy, a company/organization that specializes such testing).

 

A buddy on here mentioned to me that he was getting "tapering strips" from a facility in the Netherlands. His benzo was prepared in ever-decreasing pill doses and mailed to him every 28 days. I looked into it and it seems quite legitimate.

 

And it fulfills Libertas' R1 idea.

 

Here's the link:

 

https://www.taperingstrip.org/

 

I sure wish I had known about tapering strips when I was struggling.

 

Katz

 

Great information.  I'd like to add here, b/c, IMO, there are vast differences regarding medications, tapers, etc. pertaining to countries.  I think if ever there's a site where country should be listed in members' descriptions, it's BB.  I've brought this up via PMs to Administrators - They're all volunteers & don't necessarily have IT backgrounds.

 

However, after many efforts w/no conclusions, I'd read a post from a member in Sweden, or somewhere in Europe, who did have country listed under member name.  Hmmm...how?   I PMd & they were kind enough to respond/inform they'd inserted it in their profile under "quote".  No Administrator had been able to provide that valuable information.  Obviously, we can all learn from each other here.

 

A) There should be an update/revision to community forum that has a line for this in member profiles, but if that can't, or won't, be corrected/updated, then please have this information readily available to give to members.  B)  Administrators:  Please put in Forum Instructions/Sticky & learn about this yourselves.  Once that kindly member shared the information, it's very easy to do & certainly more important information than a quote.  Sharing it here, so members' will know about it & how to do so, to update their own.  Of course, up to members, themselves, whether or not they want to include it; however, I've seen members including this info. w/in their posts (cumbersome) on various threads, so don't seem averse to doing this.  It's that members don't know where to put it.  That's why I'm sharing what I'd gleaned from this other member here.  I hope members' who see this will update their profiles, as I think a lot of us read about things in posts we didn't know about before, perhaps, even take time to research it; only to learn N/A in our own countries.  (Threads on Technical Support Forum go pretty ignored/unanswered & this is important.)  Thank you.

 

P.S. There is a Lisa Ling/CNN Documentary-dedicated Thread, which Administrators made an "Attention" Upper-Right corner, in green.

http://www.benzobuddies.org/forum/index.php?topic=228534.0

[[Qu...]]

I share people’s hopes that this will change doctors’ practices. But I wonder if watching a documentary (or most likely not watching it but hearing about it from patients) will have a greater effect than seeing your actual patients go through withdrawal. They have been dismissing that for years, why not this? “Oh, that’s just a few outliers or complainers.” I’m hopeful, but as the folks involved in helping bring this event about have noted, it’s not like it’s going to “fix” this.

 

I think it will give certainly give patients the language and the backup to start insisting on proper treatment. That is huge.

 

I think an interesting and illuminating example is how the VA is now insisting that those using its services either get their opioid med or their benzo med. they can’t have both. Makes sense for new patients, mostly, but it seems they are doing it for those who have been on these medications for a long time, and doing so against their will.

 

I think we’ll see a lot of doctors not watch the show, but be convinced in whatever way (follow up spots, colleagues, etc) that benzos are overprescribed, and then make foolish and misinformed choices. Which is why it’s so important that we think beyond this moment and keep informing people. A lot of our positive thinking involves 1) doctors literally watching the program, 2)them having the humility to change their ways. It’s still a monumental task to turn a ship this big that has been chugging along for this long.

[[Cu...]]

DE Foster has a podcast at benzo free.org.  He reads people's stories but is considering bringing people on.

 

Great information: thanks for posting it.  I googled & found it.  Suggestion for members: Post/upload links to such sites. 

Link to benzofree.org

 

https://benzoreform.org/reform-initiatives/

 

Administrators:  Information contained on this Thread seems much more valuable than to belong on "Chewing The Fat".  I'd only even found this, b/c of a link posted on a Thread, elsewhere.  Plus, is there a Forum where all helpful organizations, along w/benzo-related blogs (other than member-created blogs, as that already has its' own...some doctors have blogs on this subject)/appendages could be located?  (If there already is, I'm sorry I'm unaware of it.  I did search Community Thread topics, once again, before posting this.)  Maybe create its' own Forum, under Subscriptions/Support Groups.  So that members have searches easily at their disposal, readily available here on BB Community, where we're getting a lot of information which is available to us (in addition to however much research we're each, individually, able to put into this), rather than just randomly stumbling across them on Threads, as was the case for me in this particular instance.  Thank You for taking under consideration.    I'd joined here once in my taper 6 months.  I'd read here, for about 5 months prior to signing up, as well as read 1 book & doing quite a bit of online research.  I'm now 7-1/2 months' post-jump & this is 1st time I've come across information on this organization. 

 

 

Also on that, wouldn't it greatly behoove BenzoBuddies to have paid employees, in addition to volunteers?  That's great for peer support, but this is something beyond & really should have people in both medical & mental-health care fields, as well as IT (Information Technology).  How to set something like that, in motion? 

 

- One of the worst parts of this:  those in the throes of vile w/d sxs & perhaps, additional medical illnesses or issues, have little energy to go beyond the merest activities of daily living - And, I do mean basic: i.e. nourishment, hygiene -  Never mind being active proponents to help further benzo awareness efforts along, other than making donations or sharing personal sxs/alternatives/coping strategies/forwarding FYI/links here.  The crucial word being "active". 

 

I never take any issue w/those who have reached a healthy state of affairs beyond this & their own suffering is behind them. - That's what my hopes are pinned on/that & my own perseverance, strength & courage.  -  It's not pleasant to revisit one's own pain, regardless of what that pain involved.  The healthiest state of mind is in present & also, to look forward; it's not in looking back.  So, very grateful for those who are very moved on & do return to help others.  That's generosity of spirit. 

 

 

[[Li...]]

I find this to be a valuable thread as well.  Identifying areas where we think our community needs help as well as what we as a community could do to obtain that help is empowering.  Another tip of the hat to QQ for starting the thread!

 

Great ideas re: improvements in BB, CKK. 

 

I also appreciate your recognition of the Alliance for Benzodiazepine Best Practices. The Alliance is engaged in several groundbreaking initiatives that can be of direct benefit to members of this community, including initiatives related to best practice discontinuation of benzodiazepines.

 

In addition to the link CKK provided, here are other ways to learn more about the Alliance and its work:

 

The Alliance for Benzodiazepine Best Practices

https://benzoreform.org/

 

The Benzodiazepine Withdrawal Symposium

 

The Alliance was involved with a recent Benzodiazepine Withdrawal Symposium hosted by the University of Arizona College of Medicine. The above video is long, but I found two segments to be particularly compelling. The first features Carrie, a benzodiazepine withdrawal survivor (who is the wife of the founder/president of the Alliance). The second features Dr. Steven Wright, a medical consultant to the Alliance, who has experience with discontinuation of benzodiazepines and “gets it.”

 

Abstracts and Slides of Dr. Wright’s presentation at the Symposium

https://medicine.arizona.edu/benzodiazepine-withdrawal-symposium

 

[[...]]

Great thread!

My brainstorms: I have not evaluated for feasibility- just throwing ideas out there.

 

1. A place for ppl in Benzo w/d to go and stay. There is such a place in San Diego. They have a wkly  routine w/ things like yoga, counseling, meditation, exercise, nutrition, etc. mostly one on one. Obviously very expensive (~$20,000/mo).  But an outpatient type facility with these services under one roof, within driving distance from home- not necessarily one on one. I would seriously consider going to something like this!  Of course, this is a business venture that someone would have to think they can make work- and maybe expand/franchise to other cities.

 

2. Online support group with actual interaction. I think Baylissa has or has had this. I’ve never tried it. I often feel the yearning to connect to someone and feel very lonely in this.

 

3. Educating. This HAS to start at the medical school level. It is being done at Stanford I believe. But taking this to every medical school is key. A lecture perhaps and the same lecture can be used at every school. Maybe one of the non-profits could spearhead this. Maybe to put together the lecture. Then present it or find Benzo-wise docs across the country to present it at local medical schools. Or instead of a lecture, BWS is even better suited as a case example in problem-based learning style. A case is presented and students work in small grps over a few wks diagnosing and learning abt the case.

 

4. Educating doctors. Many here have told our doctors and been written off. We could all add out initial prescribing doctors to an address list. Write a letter explaining our story, sxs, etc. Then each person mails their letter to every doctor on the list. There could be a template for the letter to help get ppl started. And software or a word document of the addresses to make it easy to print labels. “I understand you prescribe benzodiazepines and you may not know about BWS...”

 

5. We all send the same letters to politicians- our state legislators? Federal? Not sure.

 

6. We all send the same letters to lawyers?

 

7. Or maybe a buddie volunteer collects all these letters and compiled and sends to docs, lawyers, politicians, FDA.

 

8. Getting the story on other big media outlets.

 

This is what I’ve got for now. Thanks QQ!

[[Cu...]]

Great thread!

My brainstorms: I have not evaluated for feasibility- just throwing ideas out there.

 

1. A place for ppl in Benzo w/d to go and stay. There is such a place in San Diego. They have a wkly  routine w/ things like yoga, counseling, meditation, exercise, nutrition, etc. mostly one on one. Obviously very expensive (~$20,000/mo).  But an outpatient type facility with these services under one roof, within driving distance from home- not necessarily one on one. I would seriously consider going to something like this!  Of course, this is a business venture that someone would have to think they can make work- and maybe expand/franchise to other cities.

 

2. Online support group with actual interaction. I think Baylissa has or has had this. I’ve never tried it. I often feel the yearning to connect to someone and feel very lonely in this.

 

3. Educating. This HAS to start at the medical school level. It is being done at Stanford I believe. But taking this to every medical school is key. A lecture perhaps and the same lecture can be used at every school. Maybe one of the non-profits could spearhead this. Maybe to put together the lecture. Then present it or find Benzo-wise docs across the country to present it at local medical schools. Or instead of a lecture, BWS is even better suited as a case example in problem-based learning style. A case is presented and students work in small grps over a few wks diagnosing and learning abt the case.

 

4. Educating doctors. Many here have told our doctors and been written off. We could all add out initial prescribing doctors to an address list. Write a letter explaining our story, sxs, etc. Then each person mails their letter to every doctor on the list. There could be a template for the letter to help get ppl started. And software or a word document of the addresses to make it easy to print labels. “I understand you prescribe benzodiazepines and you may not know about BWS...”

 

5. We all send the same letters to politicians- our state legislators? Federal? Not sure.

 

6. We all send the same letters to lawyers?

 

7. Or maybe a buddie volunteer collects all these letters and compiled and sends to docs, lawyers, politicians, FDA.

 

8. Getting the story on other big media outlets.

 

This is what I’ve got for now. Thanks QQ!

 

VG+++ thought-provoking list, with excellent presentation.  The thought of implementing it is completely overwhelming (at least, for me, @ this time.

It's about all I can do to get out of bed, stay hydrated & fed.)  Perhaps, those who have somehow, miraculously, come through better than myself, can give it some thought & hopefully take action on their own behalf & those still suffering, as well as to help ward off potential further harm. 

 

Yes, this is extremely isolating, too.  Thank you for the mention of Baylissa.  What is meant by "actual" interaction?  How is it different from BB's? 

Anyone here have any experience w/Talkspace, online therapy?  PMs okay w/me, if hesitant to post re: Baylissa support group or Talkspace.

Thank you. 

 

[[...]]

Thank you CKK. This list was not meant for one person to implement lol. Just putting all my ideas in one place. I see this list as the way for mainstream change.

 

One more idea for QQ:  on this thread, every now and again, make a post with all suggestions that are still on the table - so it’s summarized in one comment- and write what page the summary is on - maybe in your sig or at beginning of thread if poss. After reading thru the whole thread it’s hard to remember the suggestions I read in the beginning of the thread. A periodic summary keeps it current and easy to read and maybe more actionable. Def need some volunteer, fairly healed buddies to spearhead some of the ideas.

 

Of course research but idk what to even say abt that and it just doesn’t feel actionable - requires an interested researcher and money - that’s super long term and probably not the first step.

 

Baylissa changes her offerings regularly so not sure what she’s currently doing.  CHeck out her website to see.

[[ci...]]

I'm going to throw out a GRAND idea as the original poster suggested:

 

Why not approach the Bill and Melinda Gates Foundation for research?

They have the money. They support scientific inquiry.  They even have the researchers.  They want to do more for the betterment of society. 

 

I have no idea how one would approach something like that.  It would be really important to couch it in a very professional, scientific way. 

[[...]]

Circlestar- great idea!  And the publicity would be great too!

[[va...]]

I love everything that's being proposed here and it would be life changing if Bill and melinda gates wished to take part in it. Allowing people to taper over a period of even two years or more must be stressed above anything else. If the stress is placed on how bad benzos are, the media sensationalism and over simplification of things could lead doctors to CT us all.

[[Ba...]]

Hi, I am reading just a little of this thread as in very bad shape today.

 

I think we need some benzo village, or place we could stay for a while.  What is this San Diego place??      And me, with a sleep disorder to begin with, and reversed hours, would need to be left alone and just interact at certain times. (I realize nobody else has this issue).  Think benzo people need a lot of quiet time generally, too.

 

I think a phone hot line is needed.

 

Re the Baylissa question, I do think that phone contact is way more valuable than just typing posts-- but that is me.  A voice makes a huge difference or there would not be quite a few people going into coaching as Baylissa does.

[[ra...]]

following

[[so...]]

When you consider the amount of people in the USA who are suffering in benzo withdrawal and we haven’t got one free help line, it is ridiculous.  The UK has had several for decades.  Come on USA. 

 

Sofa