The Long Hold Support Group

[[de...]]

Delta- Yes, I actually cut a whole .5mg of K, and then held for a year.  If I had to do it again, I would cut smaller amounts at a time, but I would still advise to hold.  So my first three years of taper, in V equivalents would have been, 50-->40mg, hold 1 year.  40mg-30mg, hold 1 year.  Below 30mg, I didn't cut the whole 10mg at a time, it was less, but the total amount of time with holding was another year.  (Also I messed up the math in my first post about the equivalents.  It took me 3 years, with giant holds to get from 2.5mgK-->1.0mgK, in valium equiv., 50mgV-->20mg.) 

 

GreenCup!

 

So you first held at 2mg K for 1 year?  Then held at 1.5mg K for another year?  After cutting .5mg each time? 

 

May I ask why you decided to cut in .5mg increments?  And as you held at 2mg K, was that year tolerable in terms of any wd sxs?  That is, how helpful was your hold? 

 

 

Yes that is what I did.  I cut .5mg because...well I think I had .5mg tablets and my doc really wanted me to cut down to 1mg a day.  She thought 2.5mg a day was too much.  So she actually advised me to cut the .5mg.  She said to just try to go without it a month, and see how it went.  Well that year, was not actually too bad.  I would say I stabilized after about three months.  The next cut, however, which was also .5mg, and maybe less than a year, but it hit me much harder.  I had more serious symptoms and after that, I remember saying to my doctor that I was going to wait at least a year, before I made any more cuts or decisions about what I was doing.

 

At that point, I had not decided to taper completely off, I was just trying to cut down, and keep my options open.  For the most part I was pretty functional, but like sick for a for months after the cut.  That time is NOTHING like what I am experiencing now.  At these low doses, it's so much more, and I am having way more symptoms now.

 

GreenCup, thank you so much for sharing what you went through, and I'm very sorry you're having more symptoms now.  I hope they ease up so you can have a smoother trip down to zero K, and soon! 

[[de...]]

My fellow LHSG BBs, so here is my report, the one I threatened with some posts back. 

 

I made it up to page 200 of the LHSG thread , reviewed my notes, analyzed some symptoms and their timeline, skimmed a book (thanks Gingermint for mentioning Dr. Breggin!), nixed the idea of cutting, considered updosing, felt conflicted yet again, and now think the "best" option is to hold steady. 

 

In case what I've gathered could be of any use to anyone, I enclose the below: 

 

Dosages while/at holding, gleaned from LHSG posts:

 

Found nothing that says holding at higher benzo doses don't work, though data/anecdotes on actual benefits of holding at higher doses is definitely more sparse than data/anecdotes from holding at lower doses, maybe just as an artifact of fewer people being on higher doses, don't know.  If I got any of the details wrong below, please feel free to correct any errors. 

• oscar - 7.25mg Librium, equivalent to 2.9mg Valium (held 15 months)
  
• freeme - 13.5mg Valium (held 5 months)
  
• laineyk - 7mg Valium (held 4.5 months)
  
• builder - 9mg Valium (held 2 years)
  
• Valley Um - 11.5mg Valium (held 6 months)
  
• lynn33 - 1mg Xanax (held 8 months)
  
• Julz - 2mg Klonopin (held 4 months)
  
• InnerSanctuary - 18.6mg Valium (held 8 months)
  
• Mr Anderson - 1.0625mg Xanax (held 3 months)
  
• FluterByee - 1.4mg Xanax (held 3 months)
  
• Julianna2014 - 4mg Valium (held 2 years)
  
• gardener99 - somewhere below 1.26mg Xanax after crossover to Librium (held almost 1 year)
  
• Heathcliff - 1.2mg Valium (holds of various lengths up to 3 months)
  
• begood - around 2.5mg Valium from what I could figure out
  
• Stut 55 - 2mg Valium (holding currently?)
  
• GreenCup - 2mg Klonopin (held 1 year)
  

Some relevant nuggets that I came across in various LHSG posts:

 

"Holding is a powerful tapering tool, is part of tapering and gives the brain and body a chance to catch up from accumulated cuts."

 

"Technically if you hold long enough, you should get to a point of stability regardless of the dose.  Most people don't hold long enough and continue to get hit with lag time of cuts."

 

"Holding at any level should bring stability except in very rare cases where the drug is toxic."

 

"That's the hard part of holding.  You don't feel better for what seems like quite a while and then start getting windows after a time, but it's anything but linear and there are times when you might subjectively feel worse."

 

"There are rare exceptions to not being able to stabilize through holding, but it's very uncommon as the body will work to create homeostasis given everything is a constant and no changes are made."

 

"The data for holding is overwhelming. It's the anxiety that usually causes people to cut while unstable as they cycle through sxs or don't improve right away. It takes time for the brain to adjust and we just have to give it that time.  I'd give it a good 6 months and see how you feel."

 

From Dr. Peter Breggin's book Medication Madness:

 

"There is no scientific reason to believe that the physical symptoms and pain suffered during withdrawal will cause further damage.  Instead, they are signs of preexisting dysfunction or damage [caused by the drug] that hopefully will clear up with time when the offending agent is stopped."

 

"It is as if we have so much brain power in reserve that a determined spirit can overcome a great deal of drug-induced residual malfunction … to live satisfying, productive, and happy lives."

 

"In an ideal world, your psychiatrist [or any prescribing doctor] would be eager to help you learn to live without toxic substances in your brain, but in the real world most psychiatrists [and other doctors] try to keep their patients on medications indefinitely."

 

[[Ol...]]

Wow, great info! A new propaganda list 

Thanks Delta!

[[St...]]

Great post Delta another one to add to Valley's.l am so glad you are holding.

    Greencup l hope the counseling helps.l have no doubt your troubles are all down to tapering.l couldn't handle a relationship at this time.

    NJ so glad the nausea has decreased.If l were you l would hold just a bit longer and enjoy the rest.

    Miyu l wish you could get some relief however you are in a very stressful situation at the moment and hopefully when your mum gets sorted out everything will settle down.

    Cant you are amazing.l am sure you are sore today.

    Everyone else l hope a huge window opens up for you all.

        Stut X

[[NJ...]]

Stut,

 

How are you doing? I know you have been having some trouble lately. Thinking of you and hope you are feeling better.

[[St...]]

Hi NJ l am doing okish.The depression has lifted thank goodness however feeling a bit more anxiety.l think I will hold until after my neck is sorted which is a bit longer than I would have liked but as we all know life does get in the way sometimes.We just have to go with it.

  I am so happy to hear your nausea has settled down.You really should consider giving it a bit longer and enjoy the good spell.You have had so much on your plate with job change, family commitments etc.

  I hope your still feeling ok and you have a better Sunday.

      Stut X

[Guest [...]]

Hi NJ l am doing okish.The depression has lifted thank goodness however feeling a bit more anxiety.l think I will hold until after my neck is sorted which is a bit longer than I would have liked but as we all know life does get in the way sometimes.We just have to go with it.

  I am so happy to hear your nausea has settled down.You really should consider giving it a bit longer and enjoy the good spell.You have had so much on your plate with job change, family commitments etc.

  I hope your still feeling ok and you have a better Sunday.

      Stut X

Hi Stut,

I'm hoping my long hold will allow my depresion and anxiety to decrease a bit. I feel a bit of a failure tbh at not being able to cut after 2 years nearly but I let all the other drugs get in the way and got off of those first. Wish I'd done the benzo first now and I'd been allowed to reinstate at my pre c/t dose.

It's encouraging to hear your depression is lifting a bit. It's been my worst symptom but could be due to other drugs I've come off as well. It's so difficult to untangle when you are polydrugged.

Steve

xxx

[[St...]]

Hi Steve it will lift l promise you I thought l was going to get stuck with depression the whole way through my taper and long after but very gradually it has dissapated.l really am shocked to say the least.

    Be patient l know you are very goal orientated so set yourself the goal of regaining your strength and stamina for your upcoming taper.

  You have stopped so many drugs so now allow your brain to heal and there is no doubt in my mind you will get off the diazepam.

    Stut X

[[Gi...]]

Delta, 

Thanks for your research and posting your findings.  They offer so much hope.  I am two months into a hold and having a few better days.  I do not plan to cut again until after June at the earliest to enjoy my grandson's graduation and a family trip.

 

Miyu, sorry about your mom.  It is such a worry when we are far from our loved ones when they need us.  You are both in my prayers.

 

I found out my relentless nausea and ramped up anxiety were due to too much thyroid.

Since my thyroid med dose was lowered six weeks ago I am free of the nausea

and anxiety is decreasing.  Lesson to myself:  it isn't always the benzo.

 

I hope everyone in this group has the best weekend possible. G.

 

 

 

[[...]]

delta1

That was some amazing analysis - thank you for doing the work and sharing so effectively.

I copied it to my google drive so I can easily find it when I need hope about healing during a hold.

I hope your mom has some great windows soon.

 

[[Aj...]]

Thanks for that info Delta.

 

What I don’t understand is that it is now thought that people reach tolerance within a few weeks so why does holding not creat tolerance withdrawal?

 

I reinstated and all of my symptoms get worse as each dose wears off.

 

I really hope this calms down if I keep holding and that I am not stuck in tolerance withdrawal.

 

 

 

[[Kg...]]

Delta the problem with your post is that there should be follow up on the people you have noted who held for a long time. Are they successfully off now?  After their long hold were they able to taper if they wished to and get off with less s/x?  Are some of the people you listed still on the benzo w/o any s/x due to their own choice and/or are some still suffering and unable to successfully taper?

 

I know some of the people named successfully tapered after a long hold, others you name are still in the throes of suffering and gave up posting because being on this site was not helpful to them. 

 

I think a more helpful list would be people who tapered successfully and are healed off of benzos. What did they do that allowed them to taper and to heal? 

 

I wish there was actual data on this but I don't think this site will allow anyone to figure this out.  The best anyone has come up from using this site from the people posting here is that the answer to how to best taper is 'it depends'.....

 

Kgirl. 

 

[[Ca...]]

Thanks for that info Delta.

 

What I don’t understand is that it is now thought that people reach tolerance within a few weeks so why does holding not creat tolerance withdrawal?

 

I reinstated and all of my symptoms get worse as each dose wears off.

 

I really hope this calms down if I keep holding and that I am not stuck in tolerance withdrawal.

Who got tolerant in a few weeks??

(U dont need to answer that..!!)

 

 

[[be...]]

Delta, I actually started at 5mg my third taper and was not a member of BB, and was at 2.5mg of Valium when I joined BB. I already knew that I had to change something, so I started the holds way before BB, and so far working well for me, of course there are some blips at times, but nothing like those first two horrific tapers. 💖 Peace.

[[St...]]

Hi l am going to chip in on this.Now l haven't any experience of being off these drugs so l can not comment on that however l will

say is this.l have learned more during my hold than l have through my taper.l have experienced and learned to deal with the ebb and flow of withdrawal symptoms.How to be patient and not despair when you are hit with a wave.Also l am not prepared to give up my life to get off this medication.l am a mother first and l haven't got the luxury of resting and taking it easy.

  I don't know if will find being off the drugs any easier but l will have got off still fully functional.

    Stut X

[[be...]]

Hi l am going to chip in on this.Now l haven't any experience of being off these drugs so l can not comment on that however l will

say is this.l have learned more during my hold than l have through my taper.l have experienced and learned to deal with the ebb and flow of withdrawal symptoms.How to be patient and not despair when you are hit with a wave.Also l am not prepared to give up my life to get off this medication.l am a mother first and l haven't got the luxury of resting and taking it easy.

  I don't know if will find being off the drugs any easier but l will have got off still fully functional.

    Stut X

I agree with you 100%, I am functional and I have learned a lot also. Yes not everyone will be, but there are different variables in play. 💖 Peace.

[[Su...]]

Hi Delta,

great post and sleuthing!  Thank you for all the data in one post about people who have held.  It seems pretty clear that holding does help -- for me anecdotally it has restored hope -- which is huge is being able to continue with the process.

I am wishing you the best for you and your Mom.  She is in such good hands with you by her side.

 

Gingermint-  so glad that the culprit for  the nausea was found!

Stutt -- I am there with you -- can't put my life on hold any longer -- don't want to.  And I'll taper successfully...

Staz -- thanks for the info about the two sites in the UK.  The written material is super helpful

 

I know I'm missing a bunch of people in a more personal post ,Greencup, Miyu, NJ, Olive, Ajusta,....

Just thinking of all of us Benzo Warriors.... we'll be so strong when we reach this finish line.

I know I'm stronger in many ways from taking part in this turtle race at all.

:smitten:

SS

[[de...]]

Thanks and all-around warm hugs to OliveKitty, Stut 55, Gingermint, Bob7, Ajusta, SufferingSixty, and anyone I'm missing! 

 

Gingermint, from what I've been able to discern, 2 months holding isn't quite enough time for the CNS to stabilize or catch up with cuts, but it's encouraging that you're seeing some better days, and by the time June rolls around, so holding 4 months by then, you could see lots of improvement in symptoms, so hang on!  And thank goodness about finding out about the thyroid med! 

 

Bob7, hope you're doing relatively well these days, and your mother as well. 

 

Ajusta, been quietly following your progress, and I am so sorry for your continued suffering, know that there are those thinking of you and hoping for your improvement as soon as possible. 

 

As for "tolerance," here's what I can share, in case it helps.  My sense is that tolerance occurs with benzos within a few weeks because the CNS adapts to the presence of the drug.  So for instance, because the benzo is now doing the work that neurotransmitter GABA was naturally doing, the CNS adapts by downregulating GABA receptors (because it thinks it doesn't "need" them or stops producing GABA, or both), so that you end up needing more of the drug to get similar effects as when you first took it, so it looks like the drug is now less effective, that you've reached tolerance.

 

What goes on during a hold -- again, my sense as of now -- includes tolerance, because you've reduced the drug, effectively decreasing drug efficacy, but because the CNS again adapts, this time by repairing, healing, upregulating GABA receptors (or producing GABA, or both) -- albeit a tiny bit at a time, so that it takes weeks and weeks and months and months -- after some necessary time, this tolerance "disappears" and you feel better.  But then, because neural healing in benzo withdrawal is not linear, you could get hit by symptoms again, as the CNS tends to another area needing repair and symptoms cycle through, so then you think you're now developing ultimate tolerance to the drug, but that's not so, and it's just healing progressing as it must. 

 

Looking at your Sig, you've really been through a lot, and after reading Breggin's book I mentioned, it seems that cumulative exposure to any psychiatric drugs all add up, in terms of how much difficulty your body will experience during tapering something like a benzo.  So that could be what's been going on with you, and you haven't yet stabilized or found a dose that'd make you more comfortable, and trying to cut right now would only destabilize you further. 

 

begood, glad to hear it's just blips for your third taper, and hoping it continues smoothly.

 

Kgirl10, I didn't set out to compile a comprehensive list of people who tapered benzos successfully and healed completely.  If you read my initial post about this and the followup post carefully, you might see that I was looking for a specific answer about holding dosages.  If you'd like "a more helpful list," I suggest you do that yourself.  To use your language, "the problem with your post" is that rather than appreciate anything that might possibly help in this painful situation we're all in, you dismiss the efforts of others and sit there complaining that this site won't let anyone figure things out, when it can actually yield some useful information if you put in the time and energy. 

 

 

 

[[Ol...]]

Hey GreenCup, I just wanted to respond to your post a few pages ago about your relationship, and say that I am very empathetic to your situation. J and I have been through the ringer over here and it sucks! It is so hard to give a relationship the love and care that it needs when you are dealing with benzo w/d. How can you possibly meet the needs of another when you are in such despair? We have a very good couples therapist as well but it's still hard as hell. He has been very understanding and loving but every person has their breaking point and he has hit it many times over! I am thankful that he is still here with me, I will be devastated if this drug takes away my love.. trying very hard to not let that happen, I'm hoping that healing comes soon and we can get on with our lives. Before benzos life was great!

[[Ca...]]

Yes, we have to work this out for ourselves...

The one size fits all is what most get from Drs.. Just dropping off 10% a month will do it for most people... (in the big wide world)

Trouble is we are not most people... and our situations and needs all differ...

What BB did for me, was to give me the means to start to work it out...

When I joined I couldnt get much helpful advice to my questions... But I did get support..!!

-The safe environment from which to start to work it all out... The best advice for me was to pop in to this group and have a look...

-And I could meet people with similar history's and medications... Take what I wanted, and leave the rest...

 

When I joined, Ashton wasnt pushed, -infact many were questioning it... That is always changing..

Depends on who is posting, where, and where they are in their taper...

Who here wouldnt have tapered at 10% -if they could...??

Sadly that often changes to Holding, Dose correction, and micro tapers...

But you cant tell someone new to tapering to start on 2% -or whatever...

-Just that some people need to go slower and tapering by SX might be how it ends up...

 

I think those that are successful, are the ones that worked out their own taper..!!

 

 

 

[[Ma...]]

Hey guys,

 

I've been holding for 3 months now, the first two months were pretty bad, the third month it seemed like I was starting to heal but right now it's like I'm going through a huge wave for no reason.

 

I'm pretty much worse off than when I started holding right now, especially the Tinnitus and visual snow are becoming unbearable...it's hard to believe this is ever going to get better. How can I taper if holding doesn't even help me?

[[Ca...]]

Hey guys,

 

I've been holding for 3 months now, the first two months were pretty bad, the third month it seemed like I was starting to heal but right now it's like I'm going through a huge wave for no reason.

 

I'm pretty much worse off than when I started holding right now, especially the Tinnitus and visual snow are becoming unbearable...it's hard to believe this is ever going to get better. How can I taper if holding doesn't even help me?

Sorry u getting hit hard... Personaly, I would still make the connection to changes at Xmas and shortly after... I would encourage you to keep holding as is, because it was common for me to get hit hard, very hard (for me), a long way after a cut... The good news is that I then got stable right after...

I sure hope it all works out, whatever you decide...

Remember you are still healing as you hold...

 

Best wishes...

 

[[Ma...]]

How long would it normally take you to stabilize? I got pretty messed up after my last cut due to kindling...it's crazy that I'm still getting more damage months later though

[[...]]

SO many great posts! Thank you everyone.... all of this "consideration" and everyones personal experiences are so helpful to put into our own personal "mix" ,  to help us figure out our own paths.

 

to have a safe place to speak about what is going on for each of us is one of the most important things for me, and to receive answers based on other peoples experiences, with out judgement.

 

ThIs group is so accepting in every way  , it always has been , and I love that about it.

 

I can't respond to everyone's posts right now, but I have read and taken in each of your situations, and sending my thoughts of healing to all of you,

 

love, MiYu 

 

PS , i will try and find VAlleyums long hold "propoganda"  to post again to read for anyone who wants help considering their process and  a long hold

 

 

 

 

 

[[...]]

How long would it normally take you to stabilize? I got pretty messed up after my last cut due to kindling...it's crazy that I'm still getting more damage months later though

 

MAkeitt... I'm going to post a list of quotes for you to read from people sho have done long holds ,I hope you'll find it helpful

 

MiYu