Comprehensive Benzodiazepine Guidance Document, UK, 2014

[[Ch...]]

Don't let this throw you.  I only read to page 36 and didn't see anything that was new.  I took sleeping pills for 25 years and Xanax for about 10 (some overlap in years).  I tapered off three years ago and I'm doing fine.  I'm 64 years old, spent half my life on benzos and I'm fully functional now.

 

Yes, I know…three years.  But 31 years total of use.  Keep tapering, it's worth coming back to yourself.

 

And you will. 

 

[[me...]]

I don't know. Tapering was my life, my star, my everything. All BC I thought no matter what sx I had, it was fine, bc the nightmare of fourteen years of depression and anxiety and GI issues and fear and self harm and awful medications to treat side effects of this awful drug, things I didn't have before klonopin, would be gone when my brain healed.  With100% reassurance that it would. No doubt, no what ifs, total belief that it would, that there was no other possible outcome. Now this possible outcome hangs there...suddenly. From clicking on a link that looked interesting. Complete change in my thinking of this taper. Feel like I did in tolerance WD, when I wanted to bang my head, wanted to die.  Felt trapped and imprisoned. Feel it again. It is awful. Symptoms no matter how bad I can tolerate. This is very different...a total shift in my perception.

 

My worst mental symptom was raging, anxiety-driven hypochondria.  During early withdrawal, it wasn't unusual for me to believe that I was dying of several dreadful diseases each day.  I'd google my symptoms and my panic would be off to the races.  It all seems funny to me now, but due to my extreme anxiety and hyper-vigilance I believed these catastrophic thoughts as long as I had them.  They were real to me at the time.  But they were all "benzo-lies," and turned out to be untrue, every last on of them.  I soon realized that googling symptoms, or reading anything here on BB that was likely to upset me, was something I couldn't afford to do. This thread is a good example of something I probably wouldn't have read.  And frankly, my advice to you would be to stop reading this sort of thing if it upsets you this much. 

 

 

[[NY...]]

Thank you all. I am glad you all recovered but also the long process is frightening. Three years also makes me spin. I understand you are all trying to help. Thank you.

[[NY...]]

I don't know. Tapering was my life, my star, my everything. All BC I thought no matter what sx I had, it was fine, bc the nightmare of fourteen years of depression and anxiety and GI issues and fear and self harm and awful medications to treat side effects of this awful drug, things I didn't have before klonopin, would be gone when my brain healed.  With100% reassurance that it would. No doubt, no what ifs, total belief that it would, that there was no other possible outcome. Now this possible outcome hangs there...suddenly. From clicking on a link that looked interesting. Complete change in my thinking of this taper. Feel like I did in tolerance WD, when I wanted to bang my head, wanted to die.  Felt trapped and imprisoned. Feel it again. It is awful. Symptoms no matter how bad I can tolerate. This is very different...a total shift in my perception.

 

My worst mental symptom was raging, anxiety-driven hypochondria.  During early withdrawal, it wasn't unusual for me to believe that I was dying of several dreadful diseases each day.  I'd google my symptoms and my panic would be off to the races.  It all seems funny to me now, but due to my extreme anxiety and hyper-vigilance I believed these catastrophic thoughts as long as I had them.  They were real to me at the time.  But they were all "benzo-lies," and turned out to be untrue, every last on of them.  I soon realized that googling symptoms, or reading anything here on BB that was likely to upset me, was something I couldn't afford to do. This thread is a good example of something I probably wouldn't have read.  And frankly, my advice to you would be to stop reading this sort of thing if it upsets you this much. 

 

 

I didn't know what I was going to read. It seemed educational, and I figured reassuring, would support what I believed to be true from a scientific journal. It is not a a benzo lie, it is a study. Studies have flaws, I understand.  I am the opposite of hypochondriac.. I ride my waves fine, even the worst of symptoms. Mind seeker suggested the news section was perhaps unhelpful for people in acute, however I had not heard that before. There is nothing on the site that indicates such.

 

I didn't even know there was a news section, but yes, will avoid from now on, as I do the protracted posts.

[[Ch...]]

Thank you all. I am glad you all recovered but also the long process is frightening. Three years also makes me spin. I understand you are all trying to help. Thank you.

 

Three years to be without waves anymore… I was functional starting a few months off (selling extra stuff on eBay) and by 18 months off I was working on a six month home restoration, not hiring it done, doing the work myself. 

 

It took three years for the waves to turn into ripples and the ripples to turn to complete calm.  In the perspective of having been drugged for 31 years, I guess it's no surprise.  I'm grateful that we do heal from this, unlike many other health crises.

 

It's going to be okay, it really is.  I know how impossible it is to see that in the moment.

 

 

[[NY...]]

"It's going to be okay, it really is.  I know how impossible it is to see that in the moment."

 

Tears of gratitude to you all.

 

wr

[[NY...]]

http://www.benzobuddies.org/forum/index.php?topic=66397.0

 

This was my bible, and says 'TRUTH is we ALL HEAL'. I think this should be more honest, esp since it's a go-to post. I know it is intended to be encouraging, but people, like me, read it as truth, BC highlighted and such. Figured that was bb moderators, but perhaps just page views. Either way, perhaps can be edited, not highlighting misinformation.

 

I confused this as a post that you guys 'approved especially'. Now just re read and realized that is likely not the case. Just my two cents.

[[Be...]]

NYC, in my opinion, the reason some ppl. might not heal fully is because they may have other underlying medical conditions that could be confused as benzo w/d, such as, strokes, heart problems, neuropathies, MS, Parkinson's etc.  My doc believes I may have had a stroke, but that's not from the benzo's.  I was diagnosed with Thrombophilia. 

[[NY...]]

Sorry to hear of your diagnosis, bblue. That seems like a rationale take, as does long term neurotoxicity.  Think I have been in denial... Just spoke to husband and he said yes, known this was a possibliity. Think I've avoided digging too deep into long term consequences, which is unlike me.  Held tightly to anything positive out of fear. Also whole thread has humbled me regarding my pretty rapid taper...felt like superwoman, a special case. Stubborn and arrogant. 

 

Thanks for your kindness,

wr

 

 

[[La...]]

I just want to reiterate that any study on what percentage of people heal is less current than what's happening here on BB with real people. Here we have real people going through the process of tapering medication in the real world and having real life experiences. The Success Stories and the everyday small victories need to be celebrated and highlighted because they attest to the fact that people ARE healing and improving and getting back to their lives. Many of those people have moved on from here, so they won't be around on a daily basis to remind us that we heal. But they have put their stories in writing. Those are the gifts they've given the rest of us. They represent hope. And they represent real-life studies.

 

I doubt we're going to see any definitive studies on benzodiazepine tapering and withdrawal that we can and should take as the absolute truth that applies to all people, everywhere, all the time. There are too many confounding factors -- genetics, age, gender, concurrent medication use, alcohol intake, other illnesses, etc. There's a good one from the Karolinska Institute in Sweden, but it stops after a year. Some take longer than that, but it doesn't mean they don't heal. They just didn't heal before the study ended.

 

The other thing about science and medical knowledge is that they are constantly advancing, constantly changing as we learn more and more. They evolve.  Most studies conclude with the statement that "more study is needed".

 

Right then....onwards we go!

[[lo...]]

I was so pleased to see this guidance document being produced for health care professionals in the UK.  I can't read it but have scanned it and it seems to be the most comprehensive information to date.  I am so very, very pleased.  This is a tremendous step forward.

 

Thank you, Lapis.  :thumbsup:

 

No GP can now claim they did not know!!

 

I will certainly be asking my GP about it when I am well enough to see her again.

 

Have not been able to read the many posts on this thread so sorry about that.

 

As a 40 year consumer of benzos, I am 2 years off and b***** determined to get well.  Of course there may be the rare exception where people do not get completely well but they may still be much better than they were on benzos.  This may be what happens to me, who knows, but I know life will still be so much better.

 

This document validates exactly what has happened to me.  Benzos cause depression.  Mine went away in 6 months after tapering just as stated in the document.  OMG!!  And my GP did not believe it was withdrawal, nor did my psychiatrist.

 

I think I will get this printed off and post it to them along with my 2 page letter documenting my hellish withdrawal experience.

 

:yippee: :yippee:

 

Just so pleased about this.  It has only taken a few decades!!!  >

 

 

 

[[NY...]]

I just want to reiterate that any study on what percentage of people heal is less current than what's happening here on BB with real people. Here we have real people going through the process of tapering medication in the real world and having real life experiences. The Success Stories and the everyday small victories need to be celebrated and highlighted because they attest to the fact that people ARE healing and improving and getting back to their lives. Many of those people have moved on from here, so they won't be around on a daily basis to remind us that we heal. But they have put their stories in writing. Those are the gifts they've given the rest of us. They represent hope. And they represent real-life studies.

 

I doubt we're going to see any definitive studies on benzodiazepine tapering and withdrawal that we can and should take as the absolute truth that applies to all people, everywhere, all the time. There are too many confounding factors -- genetics, age, gender, concurrent medication use, alcohol intake, other illnesses, etc. There's a good one from the Karolinska Institute in Sweden, but it stops after a year. Some take longer than that, but it doesn't mean they don't heal. They just didn't heal before the study ended.

 

The other thing about science and medical knowledge is that they are constantly advancing, constantly changing as we learn more and more. They evolve.  Most studies conclude with the statement that "more study is needed".

 

Right then....onwards we go!

 

Thanks. Even success stories are frightening. People take soooooooooo long to heal!  I have had so far what most consider a rapid taper and often cringe at going to success stories BC they say...it took five years but I'm free!!!

 

And people micro tapering ... Gah. Hearing them speak of symptoms I have with a fast cut talk of this suffering from .5mg of klonopin makes me feel again, special.

 

Something odd in my perception has changed, I'm sorry. I'm not thinking clearly. Thank you for your kindness. No further replies needed. Reached out to people on withdrawal forum for help.

 

Wr

 

[[lo...]]

Sorry to hear of your diagnosis, bblue. That seems like a rationale take, as does long term neurotoxicity.  Think I have been in denial... Just spoke to husband and he said yes, known this was a possibliity. Think I've avoided digging too deep into long term consequences, which is unlike me.  Held tightly to anything positive out of fear. Also whole thread has humbled me regarding my pretty rapid taper...felt like superwoman, a special case. Stubborn and arrogant. 

 

Thanks for your kindness,

wr

 

I am so sorry this document had such an awful effect on you.  We all heal but some of us may not recover 100%.  As a long time user of benzos with a very poor quality of life for 40 years, all the signs are that I will make a full recovery.  If I don't, I will still have a much better quality of life than I had on benzos.  I would be very happy with 80% or 90%.

 

I think many of the articles in this section can give mixed information so best to avoid "Benzos in the News" if you are going to react badly.  I could not listen to the news for months - too upsetting.

 

Keep being positive, it is the best way for sure.

 

Hugs

 

LF 

[[Cl...]]

NYCW, I have replied to your post in the K thread...after what you are saying I do not think I want to read this article today  , better to keep ourselves as happy and positive as possible.

Lapis, thanks for sharing it, you are doing a great work, I have downloaded the article, but better read it after a very nice sleep 

[[NY...]]

Sorry to hear of your diagnosis, bblue. That seems like a rationale take, as does long term neurotoxicity.  Think I have been in denial... Just spoke to husband and he said yes, known this was a possibliity. Think I've avoided digging too deep into long term consequences, which is unlike me.  Held tightly to anything positive out of fear. Also whole thread has humbled me regarding my pretty rapid taper...felt like superwoman, a special case. Stubborn and arrogant. 

 

Thanks for your kindness,

wr

 

I am so sorry this document had such an awful effect on you.  We all heal but some of us may not recover 100%.  As a long time user of benzos with a very poor quality of life for 40 years, all the signs are that I will make a full recovery.  If I don't, I will still have a much better quality of life than I had on benzos.  I would be very happy with 80% or 90%.

 

I think many of the articles in this section can give mixed information so best to avoid "Benzos in the News" if you are going to react badly.  I could not listen to the news for months - too upsetting.

 

Keep being positive, it is the best way for sure.

 

Hugs

 

LF 

 

Thanks LF.  That is a spin that makes sense to me, someone who suffered from depression and anxiety as a result of klonopin. 80% healing I'd also take over the nightmare of tolerance withdrawal for fourteen years. Thank you!!!

 

This message really clicked 

[[lo...]]

I am so very pleased about that.

 

I hope you get 100% well very, very soon.

 

Hugs

 

LF 

 

 

 

 

[[Cl...]]

Hi again NYCW, I have copied my opinion about your post in the Klonopin Klub thread, I am not sure if I am going to heal or not, but one thing is sure, I do not want to take K anymore in the future, so sick I was all the time due to tolerance without knowing it. I have sx yes, of course I have, but nothing compared to what I was feeling when in tolerance for at least 4 years before tapering. Let your hope and optimism to comeback to your mind, let us live our lives as fully as possible while tapering.

I am sending you a big hug 

 

Quote from: NYCWaverider on April 26, 2015, 06:43:22 am

Shout out to long term users!

 

Can any long timers help me with my taper schedule?  I am doing okay so far, but do not want to get arrogant and in trouble down the road. Have high tolerance for sxs and have been in tolerance WD for many years, so get no relief from my dose.  I have been taking full dose all in the morning for past eight years, don't experience interdose WD.

 

Have felt mentally and physically better since starting taper...much better than while in tolerance WD and at 7 to 8 mg daily.

 

Long term high dose responders only please.

 

Thanks so much!

 

wr

 

Hi NYCW, I think that only Bets and I are long term users in this thread, my dose was not very high but I can relate to tolerance, many years with many doctors without knowing what was wrong with me. So painful time.

You can also write to Julz, she is doing a very clever taper, she has a blog also. She started dry micro taper few months ago and she was cutting off first 0.005 mg K/day, then he increased her rate at 0.0075 mg K/day now she is doing at 0.01 mg K per day, I like her taper a lot, I think you can do the same, do you have or can get an scale?, Amazon, 25 dollars I think, Bets surely advice you about that. Using that scale and a file and a razor, you can cut off every day instead of doing cut and hold. Let us suppose you are using 0.5 mg pills that weight in average 0.170 grams. Now I cannot see your exact dose, suppose it is 4.5 mg per day, your dose would be:

Day 1: 8 pills (0.5 mg pills or the equivalent to 4 mg K) + 1 filed pill of 0.170 grams

Day 2: 8 pills (0.5 mg pills or the equivalent to 4 mg K) + 1 filed pill of 0.167 grams

Day 3: 8 pills (0.5 mg pills or the equivalent to 4 mg K) + 1 filed pill of 0.164 grams

 

Then I think it is a good idea keep yourself at that speed for 14-20 days, if feeling alright, you can cut off 0.004 grams of pill instead of 0.003 grams daily...you can decrease or increase your speed according to your sx, even hold if needed.

I hope it helps.

Clona 

 

Good sunday morning to Everyone in this wonderful thread! I had a restless night  , I hope you feel better today and ready to live a nice Sunday 

Modify message

« Last Edit: April 26, 2015, 01:15:10 pm by Clona21 »

 

[[La...]]

I was so pleased to see this guidance document being produced for health care professionals in the UK.  I can't read it but have scanned it and it seems to be the most comprehensive information to date.  I am so very, very pleased.  This is a tremendous step forward.

 

Thank you, Lapis.  :thumbsup:

 

No GP can now claim they did not know!!

 

I will certainly be asking my GP about it when I am well enough to see her again.

 

Have not been able to read the many posts on this thread so sorry about that.

 

As a 40 year consumer of benzos, I am 2 years off and b***** determined to get well.  Of course there may be the rare exception where people do not get completely well but they may still be much better than they were on benzos.  This may be what happens to me, who knows, but I know life will still be so much better.

 

This document validates exactly what has happened to me.  Benzos cause depression.  Mine went away in 6 months after tapering just as stated in the document.  OMG!!  And my GP did not believe it was withdrawal, nor did my psychiatrist.

 

I think I will get this printed off and post it to them along with my 2 page letter documenting my hellish withdrawal experience.

 

:yippee: :yippee:

 

Just so pleased about this.  It has only taken a few decades!!!  >

 

Hi LF,

I'm so glad this document is useful to you! When I share info, I certainly don't want anyone to be upset by it. But this document -- as you state -- is comprehensive. It's aimed at health practitioners who can hopefully change and improve their prescribing practices and help people to get off benzos safely.

[[lo...]]

Hi Lapis

 

I really appreciate what you do here.  :thumbsup:

 

We can't protect vulnerable buddies from every potentially upsetting piece of information and I think buddies who feel vulnerable might be best to avoid the "Benzos in the News" Section.  All reports which refer to research on benzos are likely to contain positive and negative messages. Benzo withdrawal just makes it extremely difficult to be objective at times.

 

I just wish I could read this document thoroughly.  :'(

 

Thanks again.

 

LF 

 

 

 

 

[[Ji...]]

Hi Lapis,

 

Thank you for posting.

 

i think this is a step in the right direction. However, it' still SO limited isn't it!?

 

I really would have loved to have seen more about the cognitive and emotional effects of withdrawal. The existential space it can put people in. When I was at my worst stage of withdrawal, I just wanted someone to explain to my GP that this WAS all caused by the benzo and for him to be able to reassure me rather than tell me I had an anxiety disorder or to ignore my descriptions completely.

 

I still think GP's won't be reading this and will just wing it. Zopiclone is given out far too easily. The latest trend is pregabalin....I notice they haven't mentioned this..which is interesting.

 

 

[[Br...]]

This 63-page document from the UK was prepared in 2014, and it's clearly directed at general practitioners and health professionals. Entitled "Guidance for the use and reduction of misuse of benzodiazepines and other hypnotics and anxiolytics in general practice", it is a comprehensive guide to all aspects of benzodiazepine prescribing. It covers the full range of pertinent topics, including history and properties of benzodiazepines, indications, adverse effects, management of long-term use, withdrawal from long-term use, special populations, patient education and referral. There are many resources and charts, plus extensive references.

 

http://www.smmgp.org.uk/download/guidance/guidance025.pdf

 

Lapis, thank you for posting this info.

 

 

 

 

 

 

 

 

[[Br...]]

Also was very discouraging to read that some long term high dose users never recover. Have never read that. Wished I had not read/could erase from memory.

 

Where does it say this?

 

 

 

 

[[NY...]]

Also was very discouraging to read that some long term high dose users never recover. Have never read that. Wished I had not read/could erase from memory.

 

Where does it say this?

 

I won't go back to it, or quote it, or read it again, b/c trying to get out of this spiral, but it's in the section re: long term users. 

[[Co...]]

The body has amazing healing powers. You should not believe everything (they recommend ssri!)

It could be some take longer, and they didn't check in with them after say 5 years or 10 (i don't know what they did)

Everybody heals. The period varies. But everybody heals. Doctors don't believe in self healing bodies, otherwise we would not be on these meds in the first place.

[[NY...]]

Hi all,

 

I'll share my post from the withdrawal page, just so you know I am okay, can rest easy, this thread is not stolen by my CNS fear meltdown.  If you want to respond, you can go to my post there - it is the one with big TRIGGER WARNINGS, directed to long term users.

 

Hugs to all,

WR

 

_________

Okay, I've regained control of my taper through reassurance from Clona and others. I feel in control again, feel hopeful again.  Superwoman costume back on, heading out for a walk, re-framed healing as such - if I heal 80% only, that's okay. 

 

I was so miserable in tolerance withdrawal, doing such damage to myself, and have felt so wonderful on this taper journey - above symptoms and everything, a whole new way of thinking about my life at 40, feeling like I can adopt and care for a child (even at 80%), be a more loving partner, my GI upsets will heal, I won't have depression or anxiety anymore (or if I heal 80%, will have it only 20%, something like that?), no self-harm, no despair, no more "WR = the woman with issues"), more assertive in my career - am LCSW, but wanting to move into policy work (harm reduction/public health), but was too frightened to make career shift while in tolerance w/d.  All my sxs are bearable, b/c they are not long-lasting, nor as intense (or dangerous/destructive) as my TOLERANCE w/d sxs. 

 

I suspect that perhaps b/c I am now at 4.5mg this may change as I drop further, but damn, I dropped from 8mg (think was kidding myself with the 7mg, should change signature).  This was in the past 59 days.  I still work, still walk daily, cleared up insomnia, muscle aches, and breathing issues thorough my Chinese med/TCM practitioners.

 

Think I will make it just fine... maybe my tools as an LSCW and working with people with severe MI and addiction for the past 16 years now runs through blood and brain, plus the work I did as a child and adult, learning coping strategies (CBT, DBT, Alt med/TCM, mediation, exercise, maintaining healthy body weight, good nutrition, etc).  Maybe even b/c I kicked booze in a non-traditional way. 

 

I don't know why or how, but I'm doing this, and feel great, most of the time.  I know CNS is out of whack, and have bad days, days of feeling anxious, but I protect my CNS right now, like it's a precious egg, that needs to be handled oh so gently (see above post re: planning).  Maybe will not heal 100%, but hey, 80%, 90%, that's okay with me now! Last night UK study sent my poor CNS into fear state, which I didn't anticipate. 

 

Was hanging by a string in TOLERANCE w/d, still successful in career, still functional, but damn, those SSRIS messed me up! Understand this post is all over the place, but think SSRIs/SNRIs did just about as much damage (more?) as K.  Also, were just about as unhelpful w/sx as K.  Withdrawal from Effexor I thought was The Worst, then back on Lexapro, and c/t (this was after reinstating Lex about 5x, maybe more).  That's the closest I can relate to symptoms people post here in terms of severity - was utter hell for 59 days. The Worst Worst. Had to get on short-term disability.

 

K taper thus far has been a walk in the park in comparison + knowing I'm healing versus causing more damage to brain and organs from meds that were 'masking' (trying to) my side effects from K (Wellbutrin, Effexor, Lexapro, Sleep Aids, trazadone, Ritalin (!), Lamicatal...can't remember them all, but damn!).  This from a woman who had no hx of depression, anxiety, nada. 

 

WHY DID THEY NEVER MAKE THE CONNECTION?? My psych now is the FIRST who did, the first who actually took the time to do a complete psychological...started to connect the dots. It took him a year, but he/we did.  I will be eternally grateful. 

 

Am going to taper from the Topamax soon, as it's a relapse prevention tool only, and feel in no need of it anymore (3+ years sober, no cravings, adjusted to life w/o alcohol).

 

So yeah, in tolerance withdrawal for waaaay too long!  I am a 'bolder' and ready to keep moving forward, slow down if it gets difficult for me, or life circumstances change. And definitely slow down as I get to the lower doses, but need to get DOWN.  My body/brain are telling me this, not to do a slow taper, and my body and I communicate really, really well.  Does anyone understand what I mean?  Mind/body connection really strong and secure?

 

So, re-framed.  Hope regained.  Sorry for such a long ramble.

 

And onward...

 

WR