The Long Hold Support Group

[[ca...]]

Third, i started my taper in a bad place but was not going up in dose so i guess i am screwed good Lord it`s why i am holding right now to see if i get any better and it`s a mess for sure and hi Valley glad your doing ok !~CD

[[Va...]]

Third, i started my taper in a bad place but was not going up in dose so i guess i am screwed good Lord it`s why i am holding right now to see if i get any better and it`s a mess for sure and hi Valley glad your doing ok !~CD

Hey CD! Keep hanging in there! 

[[He...]]

Third Time Around, and can Do, and anyone else,

 

Hi!

I started my taper when I was in tolerance. I had horrible shakes and my Valium dose was already on the rise and doing nothing for me.

I had first taken it for sleep. Now I had the shakes. My doc said I had an anxiety disorder and I needed more Valium. What a wrong diagnosis! I had never had an anxiety attack in my life. Never been on any med for anxiety in my life.  Never been on any psych drug in my life! I knew this was a reaction to the Valium, and that I was in tolerance, and I wanted off! I knew I was in tolerance. I needed to withdrawal from this horrible drug! . What my doc wanted me to do, take more Valium, would just have made  things worse. It would have been a never ending rise in my dose.

What an idiot dr. He was a g.p. Sure he knew how to dispense the Valium, but he had no idea what tolerance looked like or how to get off this poison.

So I went to a psych and he confirmed what I thought.

And that began my taper.

 

As I started to taper, my shakes did not go away immediately. It took a while. but as I went down in dose, eventually my shakes went away.

 

So, no, I do not think a person can be in tolerance withdrawal when they are tapering! I don't believe there is such a thing.

 

I get sdx when I taper too fast  or too big.its totally different. Now my wdsx are from my brain adjusting to getting less and less Valium each time I cut. My brain is healing.

IMO, there is no such thing as tolerance in withdrawal. It just means you might be going too fast.

 

So don't be afraid to start a taper when you realize you are dependent on a benzo and you get the signs of tolerance.(shakes,etc.)  That's your body telling you...get off this poison!

 

Heath

[[ga...]]

I have been awal for a very long time,if anyone remembers me. I got very ill in December, and have been on a round of intense medications, it's not over. Tapering went out the window. It's not over yet. Just wanted to say whats up, and assure everyone I am alive.

 

Hi, Dove. Thanks for checking in! I'm sorry you're having such a rough time. Hope things turn around for you soon.

Gard

[[He...]]

Welcome back baddove,

glad to see you here sgain. Hope things get better for you.

 

Heath,

 

[[...]]

Hi my dear long hold friends.

 

I haven't been on the computer for about a week and won't be again next week. I just tried to read through about 40 pages of this thread. So much going on.

 

I have to say that all the wonderful things everyone said to Heath really helped me too as I am struggling with a really bad wave again. It almost seems like my waves have gotten worse since I've started getting little windows here and there. Is it because I do too much when I feel better?

 

I'm so happy to hear that you are sleeping better Cant. I think that makes everything so much easier to deal with.

 

Congratulations on getting to .85mg BG. I hope your hold goes really well. (I also hope I have the right person  )

 

Teeth pain, yes. Even jaw pain at times.

 

I also have a stash for fear of being cut off. I think I have about a years worth now. My doctor never drops my dose even though I've told him I'm tapering. I hope I didn't just jinx myself! My stash isn't in an easily accessible place though so now I'm thinking I may need to put it somewhere I can get to it faster if there is a disaster. Maybe a couple of spots. One upstairs and one downstairs. My pdoc said that they've done studies that show the benzo's don't lose much in their potency even five years out!!

 

Happy Mother's day to all the mothers here.

 

Even though I haven't been posting much recently I still try to catch up. I think things will change this summer as I will probably be alone all day everyday and since I don't leave the house, agoraphobia sucks, I have my friends here   I do think of all of you often.  :smitten:  :hug:

Stay Strong, I have heard that once we start having windows, that they are bound to come again, hold on, and know that we are all here for you, and that each step we make towards our recovery will be rocky, but we are and always remain "Warriors" and so we do the best we can each moment of the day and the time passes, and we become stronger.

 

Thanks Gard and BG. Stay strong indeed. Every day we are one day closer to where we want to be I'm hoping for some more windows but I think the stress of changes and my hubby traveling have me in this wave for a little while. I'm sure it will pass in time. So glad I'm holding right now and so glad for all of you and your wonderful stories and advice. It's good getting to know you all.

 

Hugs 

[[He...]]

And now it's the dizzies! But this too shall pass.

[[...]]

Hi everyone ,

So I. Still feeling so crappy on this much Valium ...... I'd say my symptoms are still WD type symptoms , weakness , stress intolerance , stomach issues now, a lot of back pain . No symptoms relieved by V doses .  And my nervous system feels really fragile ....is that a real thing? If it wwasnt real then maybe I'd be having Windows , I don't know .

 

But I feel stuck . I'm afraid to cut as I think I'd get some nasty WDs , but I'm pretty sure my body is hating the V at this point .

Don't know what to do . I would have thought I'd be feeling somewhat better by now...

 

I feel at some point I, going to have to make a decision to try a cut , but my last few attempts  did not go well..... Stuck between a rock and a hard place it feels like . And nothing like what I'd calla true ' window' . Early on in my taper I did have a few , but haven't had a real window in many months. I've had better days , but never a feeling ' normal' . Well , as I said I've had better days where I've had more energy , but now I just feel sick and toxic all the time , drugged .... Sucks ....

 

Sorry for the moan ..... Feeling depressed that I can't seem to stabilize or move forwards .

 

Love , MiYu 

 

 

[[Va...]]

Hi everyone ,

So I. Still feeling so crappy on this much Valium ...... I'd say my symptoms are still WD type symptoms , weakness , stress intolerance , stomach issues now, a lot of back pain . No symptoms relieved by V doses .  And my nervous system feels really fragile ....is that a real thing? If it wwasnt real then maybe I'd be having Windows , I don't know .

 

But I feel stuck . I'm afraid to cut as I think I'd get some nasty WDs , but I'm pretty sure my body is hating the V at this point .

Don't know what to do . I would have thought I'd be feeling somewhat better by now...

 

I feel at some point I, going to have to make a decision to try a cut , but my last few attempts  did not go well..... Stuck between a rock and a hard place it feels like . And nothing like what I'd calla true ' window' . Early on in my taper I did have a few , but haven't had a real window in many months. I've had better days , but never a feeling ' normal' . Well , as I said I've had better days where I've had more energy , but now I just feel sick and toxic all the time , drugged .... Sucks ....

 

Sorry for the moan ..... Feeling depressed that I can't seem to stabilize or move forwards .

 

Love , MiYu 

So sorry you're having a rough time MIYu. It really does sound like withdrawal to me. If you were having any windows at all it would show that you're starting to stabilize. It's a tough call to make. If you decide to try a cut, make it very small and see how you react. If you feel benzo flu coming on,you can always dose back to where you were as soon as you feel it. It is a frustrating process but sometimes doing nothing is the best thing. Hope you can get some peace of mind.  --V

[[Ca...]]

Hi everyone ,

So I. Still feeling so crappy on this much Valium ...... I'd say my symptoms are still WD type symptoms , weakness , stress intolerance , stomach issues now, a lot of back pain . No symptoms relieved by V doses .  And my nervous system feels really fragile ....is that a real thing? If it wwasnt real then maybe I'd be having Windows , I don't know .

 

But I feel stuck . I'm afraid to cut as I think I'd get some nasty WDs , but I'm pretty sure my body is hating the V at this point .

Don't know what to do . I would have thought I'd be feeling somewhat better by now...

 

I feel at some point I, going to have to make a decision to try a cut , but my last few attempts  did not go well..... Stuck between a rock and a hard place it feels like . And nothing like what I'd calla true ' window' . Early on in my taper I did have a few , but haven't had a real window in many months. I've had better days , but never a feeling ' normal' . Well , as I said I've had better days where I've had more energy , but now I just feel sick and toxic all the time , drugged .... Sucks ....

 

Sorry for the moan ..... Feeling depressed that I can't seem to stabilize or move forwards .

 

Love , MiYu 

So sorry you're having a rough time MIYu. It really does sound like withdrawal to me. If you were having any windows at all it would show that you're starting to stabilize. It's a tough call to make. If you decide to try a cut, make it very small and see how you react. If you feel benzo flu coming on,you can always dose back to where you were as soon as you feel it. It is a frustrating process but sometimes doing nothing is the best thing. Hope you can get some peace of mind.  --V

MiYu, Im so glad u posted that... It is a reflection of me and my situation, your recent posts have been unfolding as I feel too... same questions in my head. And I have a constant urge to cut...

Yet every day that im going to cut, I wake up with some indication to just wait another day to see...

This is realy pushing the listening to my body to its limits...  I have had a shake up after that window, and went a bit backwards, which scared me. The fatigue was like nothing I can describe... But I know for me, that im yet to reach my stable platform to taper from...

This is just me and I dont intend to try to fit you in the same box, just thought i would mention the simularities as I saw them...

 

My best to All...

 

Heath, Great job on splitting the Withdrawal from the Tolerance...

My pet hate is seeing those two words together... 

 

 

[[...]]

thanks Valley and Cant..... Sorry you are in the same boat Cant 

I guess the last two days Ive been feeling tired of being sick and tired and really wanting it to change, so hard to be this patient, and to trust that things will eventually settle down.....when it goes on so long its hard to believe it will ever change.

 

Your support means a lot , thank you.

 

my thoughts are with you all, and anyone having a rough time of it at the moment.

 

love, Miyu

[[no...]]

Hi everyone ,

So I. Still feeling so crappy on this much Valium ...... I'd say my symptoms are still WD type symptoms , weakness , stress intolerance , stomach issues now, a lot of back pain . No symptoms relieved by V doses .  And my nervous system feels really fragile ....is that a real thing? If it wwasnt real then maybe I'd be having Windows , I don't know .

 

But I feel stuck . I'm afraid to cut as I think I'd get some nasty WDs , but I'm pretty sure my body is hating the V at this point .

Don't know what to do . I would have thought I'd be feeling somewhat better by now...

 

I feel at some point I, going to have to make a decision to try a cut , but my last few attempts  did not go well..... Stuck between a rock and a hard place it feels like . And nothing like what I'd calla true ' window' . Early on in my taper I did have a few , but haven't had a real window in many months. I've had better days , but never a feeling ' normal' . Well , as I said I've had better days where I've had more energy , but now I just feel sick and toxic all the time , drugged .... Sucks ....

 

Sorry for the moan ..... Feeling depressed that I can't seem to stabilize or move forwards .

 

Love , MiYu 

 

M  that's exactly how I feel plus non stop burning and hypersensitivity,  pain and insomnia on the rise, symptoms I never had before but like you said I had better days it just these bad ones make us so indecisive, I get no relief form doses either so you not alone.  I also feel like I'm treading water going nowhere  right now, plus I have additional stress on top I can't cope with either.  But I just looked back through my posts and a few of yours this has been happening to us  both on and off, and some of our posts look like a copy of each other, than there was this one I wrote

 

Hi all  This week I had a couple of good days only to be in a really bad way by the evening or the following day, but that's my bodies sign that its fighting its way back to homoeostasis, healing hurts before you stabilise,  OW! OW! OW! !@%$^&(*()_+?"!. I also had a  window that lasted a few minutes window So hang in there it will come but you have to be patient and accept that it maybe rough going for a while.

 

But it will come eventually and the changes are so subtle you can miss the fact your improving while your feeling so bergh!  You DO heal on a hold and you DO heal while you taper, as another Buddie said you should jumped because your healed not to heal while still suffering, symptoms are a sign your CNS is till destabilised and needs to be stable before you advance any further.

 

 

Love Nova xxx  :smitten: :smitten:

 

Which was then swiftly followed by this one

 

 

 

Within minutes of writing this post I had one of the worse days ever which turned into one of the worst nights ever and no sleep, this is what I mean about its so unpredictable the road to stability, and the first thing you want to do is cut as the conviction that its the drug being in your body that's the problem becomes very strong. Where as cutting it too fast or too much ending up with too little of the drug that caused the problem in the first place and the problem now is we're unstable from the lack of the drug, and it makes you panic that its going wrong.

 

I also had an unexpected phone call off a couple of people  I was shocked and pleased to hear  from as its been 2 year's since we last spoke  and being pleased and laughing  also made me feel even more terrible after the call. They know nothing about my Benzo withdrawal so its not just stress that can wobble you its being happy or something and nothing. so as much as my brain screaming ''Do something go down in dose or of a lot further up I'm doing nothing all its going to do is make me even more unstable so I'm hanging on. Man!! I feel f-in tragic!! I hope it passes soon, and wish the same for everyone else thats suffering .

 

 

 

Love Nova xxx  :smitten:

 

 

And as some one else said

 

 

Thank you for verifying what I kind of suspected. There has been, and continues to be that window/wave pattern to this hold. I actually wasn't sure if this was something unique to me, but even then, I figured I just had to continue holding whether it is unique or not.

 

And now that the 6 month time has past, I'm going through another wave. So I'll definitely be continuing the hold. I didn't realize that this was typical of benzos at all, but its more knowledge that not only helps me "cope," but it's knowledge I think I need to be able to relay to others if the need arises. It almost feels like "Part 2" is happening now with this continuation as sx are changing, and yet they still are definitely sx of an unstable CNS.

 

I have to admit that the hold itself with these windows and waves is a stressor all by itself. When the windows occur, I'm consistently myself all day and evening, and this lasts for about a month to 6 weeks, but with that last two weeks I start slipping into a wave kind of gradually, and I don't always see it coming. And then, I'm fully in that wave, and I'm not me consistently throughout the day, and it's even hard to fully remember how good I felt during the window. And it feels kind of awful with some emotional, physical and cognitive sx.

 

I'm glad I'm here too! Thank you for saying that. I've learned a lot the hard way about benzos, and I'm glad to share what I do know.

 

 

 

 

 

Love Nova xxx  :smitten:

[[no...]]

I have been awal for a very long time,if anyone remembers me. I got very ill in December, and have been on a round of intense medications, it's not over. Tapering went out the window. It's not over yet. Just wanted to say whats up, and assure everyone I am alive.

Hi BD  I often wondered how you were,

 

 

 

Love Nova xxx  :smitten:

[[ga...]]

Nova, Miyu, Cant, Heath I'm sorry to see so many suffering on this thread. But I guess we wouldn't be here if we hadn't gotten into deep trouble. After my long hold and now doing tiny cuts I have waves again, really awful days, but I also have windows. Those windows mean so much. Thinking of you and hoping you get windows soon.

Gard

[[ca...]]

Just wanted to say Good morning to ( ALL ) and i am a bit into a 2 week hold and once again i had the stupid urge to make a cut today but i need to rein the impulsion in and keep holding and hope some longer windows and a better baseline happen. It`s a tough fight as i been at this 2 1/2 years and need to accept it`s going to take a long time = Aceptance is what i need to work on ! May everyone have a decent day ~CD

[[Th...]]

Third, i started my taper in a bad place but was not going up in dose so i guess i am screwed good Lord it`s why i am holding right now to see if i get any better and it`s a mess for sure and hi Valley glad your doing ok !~CD

 

I don't think the person who wrote not to start in tolerance was wrong. 5-6 years ago when I did my first taper off 6mg Klonopin I was in tolerance. The definition of tolerance to me is when the drugs start to have little or no effect when taken as prescribed. The brain has completely adapted to having the drugs in your system and has down regulated to balance. I don't think additional drugs are building up as just as you are taking your dose daily your body is removing all the built up doses in half. It stands to reason the body could remove more at some point than build up. Especially the lower you get. I think that's why it gets so hard at the end. The ratio of what is being removed compared to what is being replaced is greater.

 

Well back to when I was on 6mg. I was on a long time 6+ years with 3mg xanax all which did nothing when taken ( unless taken almost all at once ). I was able to taper it all in a year and heal completely . This time I was on less than a year at 4mg and it's been 10* harder.

 

This leads me to believe not only is every taper vastly different but time and dose have zero impact on how hard the taper will be. At least that is what my body told me.

 

I don't think you are screwed. I continue to believe side effects are the drug leaving your body faster than the brain heals, and we all heal at different rates, but do heal. I'm sticking to that belief because it just makes sense to me. These side effects are the yin to the yang. Each time our brain realizes it is not functioning like it should (this time too little of what it needs compared to too much while on the pills) it tries to balance. I think the side effects are not the healing itself but the catalyst to healing.

 

Just my opinion though. I think we all are just trying to make sense of this with what research is out there. I never thought I'd be at the point I was planning a 6+ month hold on a 6% cut.

[[ly...]]

 

Hey there Can Do,

 

I'm approaching 2.5yrs and can relate to the urge to cut, to get it over with.  I think it's a very prevalent compulsion here.  Part of this battle is fighting this.  I have to about slap myself in the face at times.

[[Th...]]

 

Hey there Can Do,

 

I'm approaching 2.5yrs and can relate to the urge to cut, to get it over with.  I think it's a very prevalent compulsion here.  Part of this battle is fighting this.  I have to about slap myself in the face at times.

 

It is hard! I kept saying to myself this morning I should just make one more cut for an even 1.5 before I hold. It's much easier dividing the pills up. I had to resist and remind myself I'm still not stable but have been before.

[[ca...]]

Third, i kind of agree with the theory you stated now i just need to keep this hold going but as Lynn stated it`s a hard battle seems we get feeling a bit better and think we should cut as i guess we forget just how horrible we have felt at times during this whole taper right? And yes Lynn i need to slap myself at times also as i was actually feeling i could cut a little bit more today = foolish so i got the Duct Tape out !

[[no...]]

Just wanted to say Good morning to ( ALL ) and i am a bit into a 2 week hold and once again i had the stupid urge to make a cut today but i need to rein the impulsion in and keep holding and hope some longer windows and a better baseline happen. It`s a tough fight as i been at this 2 1/2 years and need to accept it`s going to take a long time = Aceptance is what i need to work on ! May everyone have a decent day ~CD

Hi CD  Tell me about it!!  :D The belief that if we do something while we feel so bad it will make us better? Its yet another facet of the withdrawal playing with our mind, and its been screaming in my head for a while but when things calm down a bit I can shut it out but not this last few days/ week as I'm really  it badly right now.  Anyway I'm posting quotes on the subject again I hope it helps others out as well, I know even seeing it written we still hear the cut! cut! cut! voice but don't let it win hold on, and read these quotes and think first before doing anything drastic.

 

 

Love Nova xxx  :smitten:

 

I hope people can give themselves enough time to heal before tapering.  You may get that panicked feeling that you need to get the drug out of your system, but this feeling can be very misleading I think.  It makes it seem like the nature of the problem is the presence of the drug in the body, when I think it's really our body's dependence on the drug, and when we've built this dependence up for a long period of time it needs to be gradually reversed. 

 

 

 

My big lesson for today is that a hold is harder work than a taper.

 

We get impatient and want to take it down and down, or a pdoc pressures us into discontinuing since we're not at "therapeutic levels" anyway.

 

But to hold.  And hold.  And hold.  and wait until you're not suffering before you do a cut - and plan that cut weeks in advance.

[[ly...]]

Third, i kind of agree with the theory you stated now i just need to keep this hold going but as Lynn stated it`s a hard battle seems we get feeling a bit better and think we should cut as i guess we forget just how horrible we have felt at times during this whole taper right? And yes Lynn i need to slap myself at times also as i was actually feeling i could cut a little bit more today = foolish so i got the Duct Tape out !

 

I can think of a few people that would be more than willing to give me a slap...

[[no...]]

Reading your own older posts maybe helpful too, like this one I wrote from last week after Birdman explained about  how many doses you missed due to cutting down and I was shocked mine ran into thousands!!! :o

 

Love Nova xxx  :smitten:

 

Hi M I'm still rough and have had a lot of  environmental and emotional stress put on me over the last few weeks and especially this week  But I've been thinking that beofre I joined BB I used to hold indefinitely and not go to deep about why I was having symptoms as it obviously that my body hasn't got enough of the drug and needs to be able to catch up.

 

As Birdman another Buddy has said time and time again, if you were to gather up all the doses you cut down from in one go then it would equate a lot of missed doses your body is missing. Another way she put it is if you get hold of a supplement or some candy that's the same size as your pills and held them in your hands, you would physically be able to see probably 2 to 8 hundred or more missed doses that you've cut out.

 

I actually just calculated mine and in the 2 years I've been suffering its  2,469 pills now I can see that's a LOT of doses thousands?  And that's the amount your body is trying to get stabilised from, also that the longer you've been deficient in the amount where you weren't in withdrawal the longer it will take to stabilise, whether you updose or reinstate.

 

I was also long term at a high dose so that's another factor, but I have stabilised in the past after being in a mess by holding, and unfortunately I'm a now in a bigger mess than I've ever been in from cutting at Ashton's rates. But the one thing I do recall is I did have the burning in the past for along time it felt like forever and I was convinced that was it for life, and my anxiety went high like now and I was very depressed like now.

 

So some of the bad symptoms I have now I also had in the past from cutting too quick, not being aware it was Benzo withdrawal, others came along 2 years ago when I did the Ashton's cuts but even back then I knew to try cut any further while feeling like that was NOT the way to go so I did the only thing knew to do and that was hold.

 

The other problem about reading to much on here is when we see other peole making good progress while we're suffering we think that we're the ones with the problem and we're doing something wrong by holding and not recovering as quickly as others. Its the way the benzo withdrwal is is effecting our brains, my thinking exactly the same my frazzled brain keeps telling me to do something but a lot of the time doing nothing is the best thing to do and this is one of those times.

 

I also am keeping myself aware the each time it gets worse I decide I need to cut, and end up no better off or worse for doing it, that's another 'BB' ritual I've unfortunately got on long play in my brain I would never have even thought about it before I read around the forum its too much information overload as well it clouds our judgement.

 

So I have decided to stop doing the ''I must do something to stop this'' and do nothing until it does stop and yes its really, really hard but its got to be done, before I joined BB as I said there is no way I would have even thought about cutting I did up dosing, and even then had to hold for sometime before it helped. But mostly I held  where I was and was able to taper with  no symptoms or miniscule occasional ones that were absolutely no problem at all. 

 

Love Nova xxx  :smitten:

[[ca...]]

Nova, i guess we need to include Duct Tape as supplement for tapering ? Hope your doing ok !

[[no...]]

Nova, i guess we need to include Duct Tape as supplement for tapering ? Hope your doing ok !

:laugh:

[[Ca...]]

 

Hey there Can Do,

 

I'm approaching 2.5yrs and can relate to the urge to cut, to get it over with.  I think it's a very prevalent compulsion here.  Part of this battle is fighting this.  I have to about slap myself in the face at times.

 

It is hard! I kept saying to myself this morning I should just make one more cut for an even 1.5 before I hold. It's much easier dividing the pills up. I had to resist and remind myself I'm still not stable but have been before.

Third, That would be sooo hard for me... -my ocd would scream at me to cut to the easy/even dose!!! -well resisted!!!  Hang in there...