The Long Hold Support Group

[[Tr...]]

Hi everyone,

I crashed and held 10 months, updosed 4.5 months ago. That is when wd symptoms got and remain very bad. 2.5 months ago I was forced to change generics which has been the toughest of all of it. Huge weight loss. As I slowly crossed  some symptoms were beyond words.  I still have a half a mg to go.  I feel horrible every day. Prior to last 12 days I would have a easier symptom day and then a brutal day. Now it seems I’m sick almost every day.

 

Everyone around me says I’m in tolerance. I pray that’s not the case . I welcome any opinions, comments of why I can’t stabilize and get better.

 

Please explain to me why you

think I’m not in tolerance.  I’m lost.

Hi Mag,

I think of it this way. I was on Xanax for 20 + yrs and I may have been in tolerance but I sure didn't know it. My question is if we can take these drugs and not have a problem with tolerance then why does tolerance become a problem when we taper. Do you see my logic? I don't put any stock in tolerance. I think it's all wd. I never ever worry about tolerance. I'll tell you this though I believe in long holds. I have had some of the craziest, scariest sxs from wd from Xanax. I always, always got better with a hold. I did feel terrible for months holding but I kept holding until I felt good. So far I have found that it's patience with the sxs after a cut or cuts that have caught up to me. If I hold as long as I need to it works. I don't think your in tolerance but I do think you're in wd and that can go on for months with sxs changing, waxing and waning. You'll experience familiar sxs and new ones while you hold. My advice is hold even though you feel awful and possibly think you're getting worse. I always got worse as the days and weeks went by then at some point it always turned around and I would feel better. The longest I've held is 6 months.

Feel better,

Trishy

 

I tend to agree with you Trishy, that it's WD. It seems like the longer I held, the less symtomatic I got. There is a period where it seems like it's going from bad to worst and panic sets in but the longer I held the better I felt. No matter how much or how quickly we want off this poison our bodies have the final say in the matter

Hi jwl,

Yes, that's always been my experience so far. I think people panic when they are holding and things go from bad to worse and then they fear it's tolerance and so reduce again and only end up worse off then if they had just continued to hold through it all. It's sad bc they then end up in really bad shape.

[[...]]

Hi everyone,

I crashed and held 10 months, updosed 4.5 months ago. That is when wd symptoms got and remain very bad. 2.5 months ago I was forced to change generics which has been the toughest of all of it. Huge weight loss. As I slowly crossed  some symptoms were beyond words.  I still have a half a mg to go.  I feel horrible every day. Prior to last 12 days I would have a easier symptom day and then a brutal day. Now it seems I’m sick almost every day.

 

Everyone around me says I’m in tolerance. I pray that’s not the case . I welcome any opinions, comments of why I can’t stabilize and get better.

 

Please explain to me why you

think I’m not in tolerance.  I’m lost.

Hi Mag,

I think of it this way. I was on Xanax for 20 + yrs and I may have been in tolerance but I sure didn't know it. My question is if we can take these drugs and not have a problem with tolerance then why does tolerance become a problem when we taper. Do you see my logic? I don't put any stock in tolerance. I think it's all wd. I never ever worry about tolerance. I'll tell you this though I believe in long holds. I have had some of the craziest, scariest sxs from wd from Xanax. I always, always got better with a hold. I did feel terrible for months holding but I kept holding until I felt good. So far I have found that it's patience with the sxs after a cut or cuts that have caught up to me. If I hold as long as I need to it works. I don't think your in tolerance but I do think you're in wd and that can go on for months with sxs changing, waxing and waning. You'll experience familiar sxs and new ones while you hold. My advice is hold even though you feel awful and possibly think you're getting worse. I always got worse as the days and weeks went by then at some point it always turned around and I would feel better. The longest I've held is 6 months.

Feel better,

Trishy

 

I tend to agree with you Trishy, that it's WD. It seems like the longer I held, the less symtomatic I got. There is a period where it seems like it's going from bad to worst and panic sets in but the longer I held the better I felt. No matter how much or how quickly we want off this poison our bodies have the final say in the matter

Hi jwl,

Yes, that's always been my experience so far. I think people panic when they are holding and things go from bad to worse and then they fear it's tolerance and so reduce again and only end up worse off then if they had just continued to hold through it all. It's sad bc they then end up in really bad shape.

 

yes, Ive been tapering on and off for 5 years. It gets really discouraging and a part of me just wants get off ASAP , but a CT and a too rapid taper has taught me to take it as slow as possible

[[Ma...]]

Thank you for your answers.  10 month hold???  I’m feeling worse. Do you think the updose 4 months ago and the horrible generic change set me back more?  A lot of benzo people are telling me to start tapering.  I’m so confused and scared.

[[...]]

Thank you for your answers.  10 month hold???  I’m feeling worse. Do you think the updose 4 months ago and the horrible generic change set me back more?  A lot of benzo people are telling me to start tapering.  I’m so confused and scared.

 

It is very scary Magnolis. To me, updoses never worked but if it were me, I would hold at 4 mgs for as long as I need to until I stabalized. It looks like you were cutting at .5 mg increments (sometimes every month). In my opinion that's way too fast and it's probably reeking havoc on your CNS. After my CT, I held for a year and as you can see from my sig, I've been holding for 2 years. Have you ever thought of liquid micro-taper?

[[Ma...]]

I did a slow liquid microtaper and just recorded at.5 intervals. It was a successful taper til it fell apart last summer.

[[...]]

I did a slow liquid microtaper and just recorded at.5 intervals. It was a successful taper til it fell apart last summer.

 

Yes I can see that in 2018-2019 you slowed way down. It generally took me 3-6 months to reduce 1 mg. I don't know, it looks like you were doing everything right. Do you have any idea what may have caused it to "fall apart"?

[[va...]]

Trishy that was such a great post you wrote to Magnolis. We should print it and frame it! I think people should stop scaring everyone with this "tolerance withdrawal" fear mongering. It should stop. Magnolis what a tough ride you're having. Holding three months didn't do much to me, I had to hold seven months. Now every minute cut is agony. It seems that's the way its going to be for some of us. Stay strong. I'd also hold like Trishy said. I believe things get better when you hold but it can take a long time. Olive kitty held for a year and a half.

[[Ol...]]

Hey JWL I have to agree with you, I held for 1.5 years and it was the best decision I made. After that my taper was a breeze.

 

Sorry you are suffering Magnolis, I really feel for you. It is so hard to know what to do when you feel like crap and there is no set way to do it.

 

Mary, Rose Gold sounds perfect! Though I always imagine you purple anyway because of your avatar 😆

 

Trishy, VNM, Suzy, GP, everyone, love to you.

 

Stut, we miss you, love you. 💖

[[Ol...]]

VNM good to hear from you! I agree about ‘tolerance withdrawal’, I don’t even think it is really a thing.

Thinking of you 💖

[[va...]]

VNM good to hear from you! I agree about ‘tolerance withdrawal’, I don’t even think it is really a thing.

Thinking of you 💖

 

Hi Kitty I'm sorry I was a bit harsh with you the other day. I have a lot of benzo rage lately. You're always very sweet and you don't deserve it. I just had such a bad experience last summer with zero windows that I wanted to say there were no windows in acute wd but the way I said it was too blunt. I'm so glad you're off the drug and still with us. I have cut another 0.10  two days ago after being on the same dose for two months bur switching brands one month ago. I still have symptoms but I just cant hold forever so even though slowly I have to keep moving forward. I don't know why you're awake but I hope it's for good reason (sex perhaps?)  . It's 9:30 am here. I'm starting my own website. Just wrote to a web designer at 8:30 am on a Saturday. He must think I'm nuts. Which is probably true.

[[...]]

Hey JWL I have to agree with you, I held for 1.5 years and it was the best decision I made. After that my taper was a breeze.

 

Sorry you are suffering Magnolis, I really feel for you. It is so hard to know what to do when you feel like crap and there is no set way to do it.

 

Mary, Rose Gold sounds perfect! Though I always imagine you purple anyway because of your avatar 😆

 

Trishy, VNM, Suzy, GP, everyone, love to you.

 

Stut, we miss you, love you. 💖

 

Congrats on being benzo free! How are you feeling? Your taper looks texbook perfect (with the exception of the jump, of course ). I wish I would've kept my taper history. I had to redo my profile from memory and made some mistakes. For instance I started at 20 mg V not the 30 I posted.

 

To be honest, I'm pretty scared of restarting my taper.

[[Ol...]]

No offense taken, VNM. You were right. Also, when I was in what I considered to be acute, I did have moments where I felt a tiny bit better and I thought I might be finally coming out of it but of course it was just a tiny window and everything came crashing down shortly after. I didn’t have any true windows until my long hold, 3 years into my taper.

 

JWL, yes it does look good by the books but it was definitely chaotic. Not to mention I took rescue doses way more than is recommended that are not reflected in my history. 😬😬 I will say I have not taken a rescue dose since I jumped at the end of January and I hope never to 🤞🏼

I bet this last mg won’t be horrible for you. It really is such a small amount, not therapeutic at all. You have held for 2 years, which has given your body and brain lots of time to recover from the 18mgs that you have already tapered. When I tapered my last 2mgs after my long hold, I had a deep feeling that it was going to be easy and it was! I have that same feeling about your last little bit. 💗

[[Ol...]]

VNM I was not awake bc of sex ha ha! I’m on the west coast plus I am just a night owl. 1am is around when I usually go to sleep, sometimes later.

[[va...]]

Thanks for understanding olive Kitty.

 

Jwl I was terrified to cut again. Then I went down just 0.10 mgs and waited a month. If you do that, it's unlikely it will be a big deal, but I understand the fear.

[[Tr...]]

Trishy that was such a great post you wrote to Magnolis. We should print it and frame it! I think people should stop scaring everyone with this "tolerance withdrawal" fear mongering. It should stop. Magnolis what a tough ride you're having. Holding three months didn't do much to me, I had to hold seven months. Now every minute cut is agony. It seems that's the way its going to be for some of us. Stay strong. I'd also hold like Trishy said. I believe things get better when you hold but it can take a long time. Olive kitty held for a year and a half.

Thanks V, just throwing in my two cents on tolerance. I hate that our peeps here become so terrified of what they think is tolerance when it's just a prolonged wd, and what they need is just a good long hold. 

 

Stay safe woman,  :smitten:

[[Tr...]]

Hey JWL I have to agree with you, I held for 1.5 years and it was the best decision I made. After that my taper was a breeze.

 

Sorry you are suffering Magnolis, I really feel for you. It is so hard to know what to do when you feel like crap and there is no set way to do it.

 

Mary, Rose Gold sounds perfect! Though I always imagine you purple anyway because of your avatar 😆

 

Trishy, VNM, Suzy, GP, everyone, love to you.

 

Stut, we miss you, love you. 💖

Love to you too Olive  :smitten:

[[...]]

Thanks for understanding olive Kitty.

 

Jwl I was terrified to cut again. Then I went down just 0.10 mgs and waited a month. If you do that, it's unlikely it will be a big deal, but I understand the fear.

 

I'm glad that's working for you but I've never had any problems with daily titrations. I'll have some bumps but nothing a little hold won't cure

[[no...]]

Hi everyone,

I crashed and held 10 months, updosed 4.5 months ago. That is when wd symptoms got and remain very bad. 2.5 months ago I was forced to change generics which has been the toughest of all of it. Huge weight loss. As I slowly crossed  some symptoms were beyond words.  I still have a half a mg to go.  I feel horrible every day. Prior to last 12 days I would have a easier symptom day and then a brutal day. Now it seems I’m sick almost every day.

 

Everyone around me says I’m in tolerance. I pray that’s not the case . I welcome any opinions, comments of why I can’t stabilize and get better.

 

Please explain to me why you

think I’m not in tolerance.  I’m lost.

Hi Mag,

I think of it this way. I was on Xanax for 20 + yrs and I may have been in tolerance but I sure didn't know it. My question is if we can take these drugs and not have a problem with tolerance then why does tolerance become a problem when we taper. Do you see my logic? I don't put any stock in tolerance. I think it's all wd. I never ever worry about tolerance. I'll tell you this though I believe in long holds. I have had some of the craziest, scariest sxs from wd from Xanax. I always, always got better with a hold. I did feel terrible for months holding but I kept holding until I felt good. So far I have found that it's patience with the sxs after a cut or cuts that have caught up to me. If I hold as long as I need to it works. I don't think your in tolerance but I do think you're in wd and that can go on for months with sxs changing, waxing and waning. You'll experience familiar sxs and new ones while you hold. My advice is hold even though you feel awful and possibly think you're getting worse. I always got worse as the days and weeks went by then at some point it always turned around and I would feel better. The longest I've held is 6 months.

Feel better,

Trishy

 

I tend to agree with you Trishy, that it's WD. It seems like the longer I held, the less symtomatic I got. There is a period where it seems like it's going from bad to worst and panic sets in but the longer I held the better I felt. No matter how much or how quickly we want off this poison our bodies have the final say in the matter

Hi all  I'm sorry to see the above  but relived  its not just me as I was about to ask if anyone feels a LOT worse and have their  very WORST symptoms flare up for ages during a long hold as that's where I am now and have been for sometime and getting worse the last few weeks  and its taking ALL I got not to go cutting again right now.

 

Anything to make it stop, holding is VERY VERY HARD when your suffering bad things get worse  but its not the answer is it?    Before I tapered Benzos and tapered off a lot of other drugs there was NO WAY  I would make another cut if I was having symptoms, and even when I felt 100% ready and confident to make another cut and the symptoms had  stopped.

 

I would hold a little  while longer as a precaution before carrying on make sure it was definitely cutting time and it served me well. Benzos really f..k with your logic and our thinking is screwed over, and we're in a state of anxiety and traumatized as its not linear and its two steps forwards 6 backwards start again until the body is stabilized but for some of us this will take a lot longer than we'd like it to take, and then seeing someone held weeks or a couple of months then suddenly doing great while months later your still feeling like hell or worse and then that messes with your mind even more and you convince yourself its not working for you, and  the only way to stop it is to get off NOW!!

 

I also believe  for some of us that being a certain age  age has a LOT to do with it as I'm in my 60's now and can't stop thinking about what if I need to hold a year or two at my  age? (Yes I AM aware there are buddies a lot older than me tapering, but its my thoughts about my own personal circumstances I ma trying to explain here with the  greatest empathy and compassion for EVERYONE  going thorough this regardless of their age ) If I was in my 40's or 50's I wouldn't worry about it so much, but here's the real logic coming in the next sentence. 

 

Today I thought what if I continue like this and keep cutting for the next two year's and suffering anyway  for many more year's,  still trying to taper, when the lesser of two evils is two year hold then a LOT easier taper off and be able to function and have  a life during the rest of my taper.  I could live for many more year's to come I don't know, but whatever how much time I have left in this realm before the next part of my journey,  quantity does NOT matter its quality that does, and to be able  to live a year or two Benzo and symptom free is better than living and indefinite amount of time in this hell, still stuck on the crap trying to get off and go out back to the source in the cosmos and still like it anyway? F THAT!!! 

 

Also I get scared as I live alone, housebound spend a lot of time in bed lately with symptoms  with no help or support at all so my very survival depends on me alone, but again I am NOT the only person in this circumstance on BB, and others in this situation have healed beautifully with no help or support as well. So I try to hold on to that, it helps on times,  other times its a struggle  to stay sane and not think myself under, but that's  typical Benzo withdrawal brain thinking too, not the ''real'' us, we're  all passenger in a car ion a bad trip you don't want to be on and your innate healing is the driver and the driver is who dictates the speed their driving.

 

Regarding the 'Tolerance while holding'' myth, here's what someone had to say  quoted  below to someone else who was panicking about it, and their reply .

 

                                                            Love to all Nova xxx  :smitten:

 

]Yeah, the way "tolerance withdrawal' is bandied about on the benzo boards (try saying that five times really fast) drives me nuts. Especially since like you said, it's usually used to scare people into keeping cutting faster, which is almost always the opposite of what they need to be doing. VERY rarely is "just keep cutting" the right answer. Drives me nuts. Feels like I'm always the voice in the wilderness on that one. People go too fast, get into withdrawal, hold for a short time; their symptoms get worse (unrelated to the hold, it's just ongoing withdrawal from going too fast before); they get told they're in "tolerance withdrawal" and they need to start cutting again. Yet when someone CTs and has prolonged withdrawal for months or years, nobody says it's "tolerance withdrawal", because obviously that's impossible if you aren't taking the drug. What's called tolerance withdrawal is almost always just plain delayed withdrawal symptoms which are pretty much universal with benzos. Benzos are notoriously up and down and non -linear and long and drawn out, in withdrawal. Okay, thanks for letting me rant about that. The whole thing drives me nuts (she says for the third time).

 

And below is their reply

 

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.

[[va...]]

Thanks for these quotes Nova. They make a lot of sense. After seven months holding I still had windows and waves but I just decided I wanted to move forward. Of course I was much better than when I started the hold, undoubtedly.

[[Gu...]]

Great post Nova.  Mornings are tough on me too and I gradually get better/worse ? Through the day.

 

I feel like I’m on a Merry Go Round.  I used to love them when I was a child.  Now here I am 60+ and I’ve wanted to get off for so long.  Is it too late?  I hope not.  It would be nice to live in some kind of peace.

 

Love to all.

[[De...]]

Completely understand nova. I often wonder if suffering for years or getting it done faster would be quicker.  Mo matter what you suffer. It drives me nute. Idk. The whole thing eucks. I guess maybe you think you have it bad, but belie e it or not it could be worse. I'm sorry your struggling. I am too if it's any consolation. Though todayhadnt been bad. Hang in there.

[[Ma...]]

Great posts guys , this is just so complicated for each of us.  I get so tired of rarely feeling good and my symptoms changing.  I think of holding a year , but I am still too high at 8 mgs to think I can hold for a year and have an easy time coming off afterward.  So I try to think of Parkers post talking about all the construction going on as we are healing.  With the virus adding to the stress, I just wish us all an easier time and hope like hell we get a break soon.  Love you guys!  🙋🏼🙋🏼🙋🏼.    💜🎈💕💜🎈💕💜

[[...]]

I'm 60+ too Nova and it drives me nuts thinking I'm spending what years I have left in benzo hell but a CT and a too rapid taper has taught me that we can only go at a rate that our bodies/minds will allow. Once I resigned myself to that fact it made things a little tolerable. I'm so sorry you're struggling so

[[Ma...]]

If God Forbid we had to go to the hospital and our tapered dose is less than the rx on the bottle, how can we be sure we would get the tapered dose?

[[no...]]

author=Mary5588 link=topic=153201.msg3102609#msg3102609 date=1593983920]

Great posts guys , this is just so complicated for each of us.  I get so tired of rarely feeling good and my symptoms changing.  I think of holding a year , but I am still too high at 8 mgs to think I can hold for a year and have an easy time coming off afterward.  So I try to think of Parkers post talking about all the construction going on as we are healing.  With the virus adding to the stress, I just wish us all an easier time and hope like hell we get a break soon.  Love you guys!  🙋🏼🙋🏼🙋🏼.    💜🎈💕💜🎈💕💜

 

Mary  don't worry about sitting at  8mg for possibly a year or so, I'm at 12mg, if holding is what it stakes to be able to taper in less hell than being in it 24/7 for all these year's then its definitely the better of two options than still suffering  24/7 for year's  waiting to get  getting lower before holding that long  or off and suffering longer hell than if we did a year long hold now.

 

Besides it may not take that long if we're lucky we may get a good reprieve even sooner , and people have held longer at even higher doses than us and then tapered off with minimal or no symptoms , we have to remember its NOT the destination, its the journey, what we want is to get there without the suffering. I would rather take a while without suffering than get there quicker and suffer indefinitely.

 

                                                  Nova xxx  :smitten:

 

 

" I tapered too fast and hit the wall. I ended up having to hold for months before I stabilized. I was feeling so crummy I didn't feel like I would ever stabilize, but things eventually settled down.

I know how hopeless you feel right now. The best thing you can do is hold tight, don't mess with your dose and wait until things settle down."

 

"I would say holding is your best bet. You have destabilised you CNS and there is no silver bullet that will take that away at once. After we destabilise our system it usually takes some times for things to very GRADUALLY start to settle. If you noticed even the slightest bit of relief as opposed to complete lifting of symptoms it would mean you are on the right track."

 

"I have so far seen that holding got me out of any hiccup I've had. Very bad symptoms only meant I had to wait longer. But I have faith that they will disappear because I've seen them disappear just as a result of holding."

         

"I am almost 4 years out from my last benzo. In the beginning I tapered too fast and hit the wall. I ended up having to hold for months before I stabilized. I was feeling so crummy I didn't feel like I would ever stabilize, but things eventually settled down.

 

I know how hopeless you feel right now. The best thing you can do is hold tight, don't mess with your dose and wait until things settle down."

 

"I would say holding is your best bet. You have destabilised you CNS and there is no silver bullet that will take that away at once. After we destabilise our system it usually takes some times for things to very GRADUALLY start to settle. If you noticed even the slightest of relief as opposed to complete lifting of symptoms it would mean you are on the right track."

 

"Unfortunately, the classic pattern with benzo withdrawal (with all psych meds, but especially benzos) is pretty roller-coaster-y: better days/worse days/better days etc.

 

It's pretty typical in a situation where one has pushed the tapering a bit too hard and gotten into a bad patch, for it to not resolve as quickly as it has in the past. In fact this is a pretty normal pattern: we taper along and things seem to go okay, and then symptoms start to sort of build up and not resolve quite as fast as usual, and then we sort of "hit the wall." That's when it's time to stop tapering!

 

"Things get less and less wobbly the longer I hold. So that when I cut again, the system I'm re-perturbing is a stable and strong one that's going to be able to handle and adapt to the new perturbations. I think what I see happen to people a lot is, they cut and then they hold for a while, just long enough to allow the worst of it to pass, then they cut again, et cetera, but after a few of those they hit a wall.

 

I'm beginning to think--for me, at least--it's really crucial not to just hold long enough to be able to function, but to hold, at least intermittently, long enough to allow a stable homeostasis to be established, to give the body/mind a chance to attend to some deeper healing."       

 

 

People feel pretty stable after holding for a while, but then make even a tiny cut and get hit with symptoms. This will happen over and over. Yet those same people eventually, after holding for many months or even a year, are able to cut again with much less trouble. I suspect there is a lot of subtle healing that needs time, lots of time, to work its way through. Our nervous systems can reach a homeostatic state that's good enough when there are not a lot of extra stressors, but they're not fully healed and are still more fragile at that point than we realize, and can be easily pushed back over the edge. I think that's part of why we get those windows and those waves. I could be wrong but I think that's a pattern that I'm seeing."

 

You have to be so careful to taper this crap off VERY slowly!  I have also thought that I could not stabilize but that just means your brain type needs way more time to heal.  Just hold until you get stable if it does not happen then your brain is just telling you to go slower. Some people just need extra time.  If you taper faster then your S/X can heal then jumping just means a long recovery is coming and I'd rather spend that time slow tapering."

 

 

I do not care what Ashton says I NEVER cut if I am still feeling bad.  I hold until I reach a new baseline and then cut again.  This is hard since people tend to push for some odd reason.  Personally I think the withdrawal amplifies the sense of urgency so we end up psyching ourselves out and end up going faster and faster.

Jumping does not heal you.  Feeling healed should be the only reason why you jump.  Took me 3 years to figure out this simple fact"