Author Topic: The Long Hold Support Group  (Read 1344 times)

[Buddie]

The Long Hold Support Group
« on: April 20, 2022, 08:14:52 pm »
This support group started in 2016, since that time it's been a source of help and understanding for those who need to hold their tapers.  A simple but catastrophic mistake on my part has rendered the entire thread unusable and for that I apologize.  I was able to save the first and the last posts made to the thread so please, help us once again populate this thread for the benefit of those who need to slow things down to be successful.

Here is a place where all those doing LONG HOLDS can hang out.

Post what you want, where you are at and how you feel, post anything !!!



I think your body needs time to adjust,  that can take some time when you are dealing with hormones.  Don't panic about about the increase in symptoms, I honestly believe this will pass.

I would suggest eating as healthy as possible, maybe juicing to be sure your body is getting the nutrients to balance hormones out naturally.  I watched a UTUBE video a woman made after tapering off a benzodiazepine, she said in the video she made the  mistake of going on progesterone after the taper, she had the same response you are having. 

I found out I have Hashimoto's disease (thyroid).  I have realized that absolutely everything I ingest has an impact.  I am very mindful and stay away from caffeine, alcohol and all other stimulants.  I am not willing to take any chances at this point (I am eight months post taper).

With all the symptoms you describe below it sounds like you may be having a thyroid issue.  Please be sure to have your B12 checked, mine was dangerously low when I began having nerve pain, no sleep etc.  Just a thought.

With all that said, I think you are going to be ok.  Just give things some time to settle down.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #1 on: April 22, 2022, 05:01:57 pm »
A helpful post from member Valley Um.

Up dated propaganda list for the week. Hope everyone has a great week!--V





 "Yes, most of the time if people hold long enough, eventually they do come to feel better.  It can take a long time, especially if they've been tapering too fast and have gotten ahead of their body's ability to rebalance itself.  Sometimes people need to just stop tapering and take some number of months for healing, before starting to taper again.
 
In general, I hold my taper whenever I feel my symptoms ramp up at all, and I hold until they settle down. Periodically I will do a longer hold just to give my brain some extra healing time. So far every time I've done that I've had a really great period afterwards, several really good months, even once I start tapering again.
 
That's how I approach holds. However, I'm on a very slow, stable, regulated taper. People who are in more trouble usually need to hold longer, and usually don't get relief as quickly as I do."
 
"Basically, holds are how we give our brains/bodies time to catch up and heal and re-establish some kind of homeostasis during the tapering process.  So when to do them and for how long is very variable and depends on the person, the taper, their symptoms, their history, etc."

"I highly doubt that holding will harm you, but I've seen people who've taken very long to recover after getting messed up during too-aggressive or unstable tapers. It doesn't look all that different (in terms of symptoms) from when people CT or taper all the way off a med too harshly and end up in protracted withdrawal. It's just that people end up in that same shape without actually having come all the way off the meds."

"If you've thrown yourself into chaotic withdrawal syndrome by ill-advised experimentation (or poor advice), holding is probably preferable to further decreasing or quitting altogether.

You need to bring some order to the chaos. If you hold at one level (of all your drugs), you are at least giving your nervous system some stability. Given the constants -- which still may be causing adverse effects, etc. -- your nervous system will regroup over time.

Once you see some consistency in symptom pattern, you can carefully adjust dosage to see what will help."

"If you have been tapering systematically and run into a rough spot, holding can help you get past it. At least, when you hold, you can track your symptom pattern and see what the balance of waves and windows might be. If windows are gradually getting longer and more frequent -- a positive sign -- your nervous system is adjusting to the cumulative decreases and you will eventually be in a position to continue tapering.

If during a hold the windows pattern is not promising, a slight updose may be called for."

"For me, I hate these meds so much, that holding feels like they're winning somehow.

I keep trying to tell myself that it's ME that's winning, as I heal. Because I know that I heal and adapt during holds. I can feel it happening. If I hold long enough, I get to where I'm feeling pretty good. I encourage you to allow yourself the experience of holding long enough to feel good, even if that takes months. It's SO encouraging to get to that point. I cling to the memories of those times, the thoughts I find myself thinking (life is good, there's hope in my future); the way I feel strong and able to deal with stress and extra activity; and the way that even with these tiny increments, when I hold long enough to let myself feel the healing, each step I feel even better than the one before. I can tell that I'm emerging from the damage these drugs have done to me."

"Over the course of my journey, I have learned many things.  First and foremost would be to taper slowly.  Have patience and donít let the calendar determine when you will be off of your medication.  Hold when necessary for as long as necessary to maintain your stability as much as possible. 

Face your fears and they will diminish or disappear.  Keep yourself busy with activities and donít dwell on your symptoms.

Symptoms donít last forever; windows of clarity occur.  Cherish the windows and know that more will come and that they are a sign of healing."

"The first three things anyone needs to learn about tapering benzos:

1. Slow slow slow.

2. A sense of feeling panicked and like you need to rush and do something-something-anything-anything about your withdrawal symptoms is actually a classic symptom of withdrawal itself. It's very important to learn to resist that urge. The best thing you can do is usually nothing at all, just support your body's healing by good diet, gentle exercise, meditative breathing if possible, and a regular schedule of sleep/wake/eat etc.

3. There's a lag time with benzo tapers. You can make a cut and do okay, make another cut and do okay, and so on, and then all at once it will catch up with you cumulatively and you can really hit the wall. It's much better to start slow and small with small cuts and long breaks in between cuts, until you have a chance to see how the withdrawal symptoms come and go over time. It's typical with benzo tapers for there to be days when you feel great and you're sure you're all better, followed by worse days, back and forth. So see #1, don't push your luck. With practice and experience you'll learn the best pace for you. But it's a lot easier if you don't overdo it and crash--it can really set you back to do that."

"Symptoms are worsened by anxiety and fear." - Prof Ashton

"You can return to normal health." - Prof Ashton

"You must keep a positive attitude, be courageous." - Prof Ashton

"Allow time for your nervous system to recover. It will."- Prof Ashton

"The key to everything is patience. You get the chicken by hatching the egg, not by smashing it."

"The secret of patience is doing something else in the meanwhile"

"Start small and conservative. Start with a small cut and a long hold. Don't try to follow a calendar schedule; follow your body's schedule instead, by observing your own symptoms.
 
Keep a daily journal of symptoms (ranking them on a numerical scale of 1 to 5 or something like that). Don't trust yourself to remember the way your symptoms wax and wane--the drugs and the withdrawal actually interfere with our ability to reliably perceive patterns. (Trust me on this.  It's pretty much universal. Your mind will lie to you.)
 
Write it down each day and you'll see the patterns emerge.
 
Do a few small cuts and long holds this way until you have a feel for how your body is going to respond to cuts and how the withdrawal symptoms are going to unfold and play out and resolve for you.
 
There are often delayed effects from a cut that don't show up right away, and if you taper too fast, those "lag time" symptoms can add up and hit hard, and it's too late to slow down because you already made the cuts. So take it slow with long holds, and allow the full pattern to play out, so that you become familiar with it.
 
Collect data this way for two or three months. Once you have a track record, you can then decide if you want to try larger cuts and/or shorter holds.
 
Experiment conservatively until you find your optimal rate of taper.
 
This way you will become the expert on your own withdrawal process and you'll be able to tailor it to your own needs and your own life changes."

"In order to get my head around the prospects of a really slow taper I have to work through what it represents to me, the things I say to myself that encourage me to go faster. I know that I have more trouble with the holds than the increments. I think I view the hold as disempowering, as an expression of me 'needing' the medication, that I am beholden to it, its dictating the terms. This isnt a very positive relationship to the hold! Rather than a barrier to being off, I need to see it as an important strategy to success and a choice I am making. I also think that not holding long enough hasn't enabled me to have the 'good spells' and the rest I need to recover and keep going, so, being really tired, I've then wanted to speed things up, to get to the other side. My experience tells me to listen to my body and that getting my head around it is important."

"What does stabilizing mean after withdrawal syndrome has kicked in?

To me, it means not being debilitated by your withdrawals, so that activities of daily life are disrupted.Holding your dose and monitoring it (a journal is a good idea) and your instincts will tell you when you feel strong enough."

"Most people are stable on psychotropic medications before their first taper, so there are no withdrawal symptoms. Holding helps to stabilize withdrawal symptoms that are acquired while tapering, going off CT, etc. The meaning of stabilization does not change with the drug. (And the steadier the dose in your system, the more stable you will be and so there are no resulting withdrawal symptoms) Withdrawal symptoms include those which are 'physical' as well as neuroemotions, the latter experienced as emotional while they are actually physical in origin. When withdrawal symptoms subside, your quality of life is better as your ability to cope with the daily demands of living improves.

So stable means few or no withdrawal symptoms, whether physical or emotional. The concept of stabilization does not refer to lifestyle issues, though those are obviously impacted when people feel unwell. Most people stabilize when they hold (sometimes for as long as several months), and if symptoms do not entirely remit during that time, they become more manageable."

"I'm doing a micro taper and I adjust my cuts and holds according to life stressors and how I'm feeling. Seems like I generally feel the cuts within two to four days after making them, and then I hold for however long it takes (usually a week or two, with the micro cuts). I definitely do stabilize and feel better, although if I know I have a period of time with not much stress coming up, I will push it and make a couple more small cuts before I'm fully at my best. I know I'm going to feel crappy for a while as a result but I know I will hold and it will pass."
 
"When I hold for a longer period I am always rewarded with a spell of feeling pretty good, which lasts even after I start cutting again, for a while.
 
I have always felt better after holds and I have never done well with the "keep cutting even if you're suffering" approach, although some people apparently do okay with that. As always, our own bodies are the experts."

" I can only speak for myself. If i held, i know what would happen. If i made a mistake cutting, then all bets are off. I think people are just afraid of making a mistake and then getting the hammer for it. Recovering from a devastating mistake can be terrifying."

"I have had to make 3 months holds, or even longer, before I could make some progress again. a few weeks may be too little? be patient."

"I had heard about "holding" but I only did it for 3 or 4 or 5 months and then dropped again because I didn't think it worked.  However, I now believe IT DOES WORK - I JUST NEEDED TO HOLD LONGER!  The first 6 month hold I did I saw improvement in many symptoms, however about half a dozen got worse, so I dropped.
 
The next 6 month hold on a lower dose and a slower taper, saw improvement in all symptoms (to mild) with some EVEN GOING AWAY FOR THE FIRST TIME IN NEARLY 5 YEARS!  I felt almost normal for the first time in I don't now how long, it was amazing.  I had some good days and I even went shopping for the first time in 5 years!
 
This was AN AMAZING REVELATION to me because with the next drop, they all got worse again.  This proved to me that all this is definitely w/d... can you believe I still sometimes wonder and doubt (plus other people seem to question it also).  I feel a real calm now about that aspect and somehow seeing that proof/evidence has helped me a lot!  I didn't know anything about holds, let alone long ones, but I do now."

"I held for 10 months at the bottom of my benzo taper with a good result.  I'm the hold queen, and firmly believe in erring on the side of holding too long. I think that tapering when we are symptomatic contributes to needless suffering.  I realize some people have paradoxical reactions from benzos, and need to taper in the face of WD symptoms, but they are far fewer than those who benefit from prolonged holds times... several months and more."

"A benzo cut can cause an uptick in your withdrawal symptoms, and it may take longer to stabilize once you take a  cut.  I once held for 9 months and this helped me considerably.   tapering slowly has taken time, but my quality of life was only adversely impacted for the first 2 or 3 months."

"1 month may seem like a long time but it's not. On the other hand 2 mg of Klonopin is a lot. When I see how fast people went it usually gives me an idea of how long it will take for them to stabilise. In my particular situation I waited for 4 months (with what I know today I would advise anyone in my situation even longer hold).
 
I believe in the healing power of long holds. When we are struggling even minute cuts will make us feel awful. But if we allow our brain to regrow itself through holding subsequent cuts will be less painful."

"If I were in your shoes I would actually say, hold not just until you don't feel so terrible any more, but hold until you start to have consistent periods of actually feeling good. It could take a few more months but I would wait as long as it takes. This far along it's not going to make you more dependent on the benzo or cause more damage than has already been caused. And if you treat your brain well and give it the stability and gentle care that it needs, at your age, it's going to bounce back beautifully. Even at my advanced age my brain is bouncing back--after 20 years on meds! So I feel pretty confident that right now it's more important to handle your precious brain gently and lovingly than it is to hurry.
 
It's not a delay--it's a strategic retreat and rebuild. If you get to where your nervous system is really stable and strong, that will give you a whole new base to taper from, and tapering will go much better. You'll have some minimal symptoms after each cut but you'll hold until those settle down. You'll be able to get on with your life even while tapering rather than trying to get through the taper so you can get back to your life, if that makes sense. This is a race that is won by the turtles every time, if "win" means "get off the meds forever and recover fully."

"Tolerance withdrawal" is a phrase that's tossed around a lot and usually, in my opinion, used wrongly. In fact most of the time I think it's referring to prolonged withdrawal symptoms. In fact I don't think you can really use the phrase "tolerance withdrawal" during a taper, because by definition tolerance withdrawal is something that happens when you're taking steady ongoing doses of a benzo.

However, Klonopin is kind of notorious for causing a kind of delayed withdrawal with holds that might be related to the tolerance withdrawal phenomenon."

"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 nonlinear 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). "

"Been 10 days since I began stabilizing, so knock on wood, it seems I have for the most part, won this round by holding, as almost all symptoms across the board have dissipated by 85-90%, even the most minor (tinnitus).

Thanks to all who encouraged me to hold out and resist the temptation to further updosing (or going with my doc's advice, albeit well-intentioned) as I was right on the verge of doing so out of desperation to seek relief.

Withdrawal is indeed real and until you go through it long enough and then stabilize in time, even the smartest minds, physicians included, can be misled by the insidious nature of w/d into making the wrong assumptions as to causation, suggesting a course of treatment that fits a generalized paradigm, but that usually runs counter to our individual genetics and neurochemistry, especially in those whose receptors have become sensitized to any degree from past repeated "insults" to the CNS (maybe not as acute to suggest a case of kindling, but similar). Hello, medical mismanagement!

Bottom line: patience and giving time to listen to what our body is telling us. The clue: if you're having windows of any length, is this not a good indicator of your body trying to HEAL? So, I powered through the downtime and let it heal. The more acute the symptoms, the more sensitized the receptors, thus more time required to cool the hyper-excitatory response to discontinuance of a med or meds from which the brain has become habituated.

Well, I hope others can benefit from my little experience in giving them hope as well. Now I know how to read this better in the future, as each setback is like a little science experiment and an educational course from which to listen and learn, downright frightening, horrid and unpleasant as they may be. "

"The symptoms this last month have been anything but linear - a total rollercoaster, with some hours during the days better than others, and some worse - as this has progressed - and I realize this is part of the process. There is a ramp up period, followed by a small reprieve in symptoms, then it's starts to ramp up again, a perpetual ebb and flow day in, day out. So it's been impossible to judge the progression. In fact, the last few days, I feel like my symptoms are up a notch in severity which feeds into my fears and reinforces my doc's position that unless we "get the symptoms back under control" by updosing, my condition will worsen.
 
I do now agree looking back that the although the cuts were small, the frequency was likely too fast and lag time came on like a freight train. I can see my doc shaking his head in disbelief at all that, but like you said, what can we expect?"

"It takes as long as it takes.

Also, one thing I've noticed with benzo tapering, is that when I'm going a bit too fast I tend to get into this "rush rush hurry go faster get off this stuff" frame of mind, which tends to cause me to actually cut even faster. I've posted about this here and there and found other people are having the same thing. Something about the anxiety, the way the withdrawal activates our limbic system, something like that, seems to cause us to feel a kind of urgency that actually makes us do the opposite of what we need to do at that point.

So now, when I get that "hurry up and taper fast" feeling, I try to remember to stop and think about it, and make myself slow down or hold for a while if I can. 

Also want to reiterate, because it needs saying all the time and not too many people are saying it:  Even a microtaper requires intermittent holds with no reductions, no cuts at all, for a while."

"Better to err on this side of safety. In reading thousands of posts, I never heard of anyone who suffered for holding too much/long, only for too little."

"There's some mild weirdness going on in my head and legs, which I'm taking as a sign that there's still some instability going on. I've heard people claim you CAN hold for too long, but I don't really believe that. I mean, we've been "holding" on these drugs for years and, apart from the usual side effects, nothing awful happened because of it.."

" Your CNS is very sensitive to these drugs.  Please listen to your body..  Do not taper until all or most of your symptoms have resolved.  If I were in your position.. knowing what I do now, I'd plan on holding for 6 months, then starting to taper at 5% a month.  If you are okay with that pace for 2 months, you could then try going to 10% a month.
 
As long as you are having withdrawal symptoms, your body is acting as it still has the drug.  So it's possible to actually get the drug out of your system sooner, but have your body reacting to it longer.. so, your body ends up responding to the drug longer than if you came off gradually and preserved your quality of life.
 
PS.. if you have a 'window'.. a sustained period of time that lasts, say 2 months, you could think about tapering.. but if you think in terms of say, 6 months, you might do better by removing a constant temptation."
 
"While I understand the desire to get off these drugs fast, I don't think there's enough discussion of the possible benefits of an extremely SLOW taper.

And how many stories do we all hear, of people who've tried over and over again to get off meds, and have to reinstate, but have never tried an extremely slow taper with long holds? In the long run so many people spend years trying to get off the meds, suffer, are disabled much of that time, end up hospitalized, et cetera, and in the end they don't save any time at all."

"I wanted to say that I've been going through this and can see it in my journal as I track my days of symptom severity and klonopin use to offset symptoms (Might not be recommended but I'd be dead without it). I've been through this cycle so many times, and I have a theory that it's a healing process where our body is adapting and adjusting to not having the meds and that's where the pain or worse hellish days come into play, and then we feel better for a bit until our body has found a new way to heal and recover which triggers the pain/suffering cycle again.

I think of it as our body trying to find its way back home to how it should be after being nearly totally altered by these meds. On a bad day or a bad few days I think I try to remind myself that this is my body adapting and healing and it will find its way. Those better days are proof that it has though for some it takes a while to get to them and they may only last a short bit.

I remember reading something a while ago about how the body knows how to heal itself from just about anything. But often we interfere with that or things interfere with it (things like stress or other meds or other health issues that compound one another). I like the idea of trusting in my body and believing that it knows how to find its way back to its wellness.

Bad days are awful but if they mean my body is going through some kind of adaption as it heals, I feel they are worth enduring. Like when you are tired and just want to go home, traffic and bad weather slow you down and can frustrate you endlessly because you JUST WANT TO BE HOME, but those things pass. They are temporary and you will get home eventually. So accepting the traffic and bad weather as par for the course makes the journey home a whole lot better and easier on you emotionally and stress wise. simple analogy that is weak compared to what we deal with during these cycles, but at its essence it holds the truth of what is happening. Storms and delays when we just want to be home (be well again). "

"If you are tapering too fast (and I would add moving doses around, crossing over to another benzo, etc.) and get withdrawal symptoms, they may fluctuate in a windows and waves pattern. This leads a lot of people to ignore the warning signs of going too fast (or tapering while unstable). If you continue to taper, withdrawal symptoms probably will get worse. It's the nature of withdrawal symptoms to fluctuate, because the nervous system is trying to correct itself. "

"For many reasons, our emotions are on a hair-trigger, amplified, and perseverative. We probably don't even know all of what's going on physically yet, but it includes diminished prefrontal lobe executive functions, rebound amygdala, dysregulated HPA, over-active adrenals, etc. The neuro-emotions include -- neuro-fear neuro-anger neuro-guilt neuro-shame neuro-hurt neuro-regret neuro-self-criticism neuro-grudge-holding ...and more! It is very, very confusing to have these intense neuro-emotions and try to remember that they are not what they appear to be. Emotions are compelling. Emotions during recovery from psych meds are even more compelling. Sometimes, the neuro-emotion is really totally artificial. Some of my neuro-fears have been so unlikely to come to pass as to bear no resemblance to reality or to my personal history. But, I think a lot of the time, part of what makes it so confusing is that there is a grain of reality to the neuro-emotion. For example, some situation might make you a bit angry under normal circumstances, but the neuro-anger is huge. This is when it's very difficult to 1) catch it in the first place and notice this is a neuro-emotion, 2) convince ourselves, yes, this is really a neuro-emotion, not a real emotion, 3) contain the emotion, try not to act on it, or channel the energy into something safe and constructive -- like exercise or journaling or building a birdhouse.   Whenever you're having an intense, disturbing feeling, try to remind yourself that, right now -- even if it does have something to do with reality -- it is largely a neuro-emotion that you wouldn't be feeling if you were fully healed. And you *will* be fully healed. It's happening! Get ready! "

"After a severe CT it took me about six months to get to feeling stable again. I've seen this in dozens of people.  It's not at all uncommon, especially after a CT or a series of ups and downs in dosage or a series of changes of meds, to take many months to stabilize; sometimes a year or more.
 
Seems like everyone does get better eventually, though. I know there must be rare exceptions, but from what I've seen they're extremely rare.
 
Anyway, months instead of weeks is a common variation.
 
It does require more patience but it's not a sign of a bad outcome. Many people have gone through spells like this, stabilized, and then gone on to do slow tapers quite successfully. "

"People heal at different rates. In 6 months, you might find you're much better. "

""Healing from withdrawal feels like not healing at all and being certain that I'm going to be like this for the rest of my life and wondering if I'm going to have the strength to endure it.  But then finding myself driving in my car, completely relaxed, not worried about anything, remembering how at first, driving anywhere caused a continual state of panic until I got back home. I would put things off for days if I could, just so I could avoid the added stress.  Now, there is some residual fear associated with driving, caused by the memory of actually having to do it in such an intense state of fear, but once I get in the car, I relax.  It wasn't driving which caused the fear, the fear was there anyway.  A secondary fear was created out of the horrendous experience of having to drive around while being in a state of panic, I don't recommend it.
 
Healing is like feeling really awful and believing that its just getting worse and worse, until I think back carefully or read back through my thread or journal and see the truth about just how bad it was, compared to now.  It only seems like its getting worse.  Maybe its because its been going on so long, its wearing me down and wearing me out.
 
Healing is like walking backwards somewhere with your eyes closed.  You have no idea where you are heading, and you don't know where you have been until you get somewhere else and open your eyes for a few moments and look back towards where you came from.  Then you close them again and keep going.
 
Sometimes healing feels like I am standing still while the rest of the world races by, leaving me behind, and I panic.  But then I calm down and notice that no one is going anywhere.  Everyone else is racing around and around in circles and I'm sitting calmly and peacefully in the center, knowing that everything I need is right here."

"Don't think that holding is "doing nothing." Far from it. When it's needed, it's needed to free your body to do the healing it knows how to do... if we don't interfere! Tapering is necessary to get off the med, but the real recovery comes from complex healing the body does, and the real healing comes from what the body does to heal, which we don't fully understand. Sometimes a small updose steadies the body out and supports healing, sometimes it doesn't. You learned that in your case it doesn't. But healing processes from anything can be "painful" and we can't see the healing for a while - but that doesn't mean we aren't healing!"

"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."

"Not only is it okay to hold for six months, it would be good for you at this point, to give your nervous system time to recover from what it's been through. You can definitely taper down when ready, it's just going to take a lot longer than you had expected. These drugs are NOT the innocent benign wonderful things we were told they are."

"I'm currently at four months in my hold, with a vague notion of going to about 6 months to see what level of stabilisation I can achieve.  I'm making myself do it cause I want to know down the track that at least I've given a long hold a good chance."

"When people exceed their nervous system's ability to keep up, they get destablized and then must sometimes updose and  hold for a few months or more before resuming, and when all is said and done, their taper takes longer than if they had just gone ahead and done the proper taper to begin with!  Throw away the calendar and focus on living your life.  Always listen to your body.  You'll always be taking less and less, which is better than still being on the full dosage from where you came, so it's all good, right?"

"Holding makes sense to me. I can't imagine tapering through this. I don't think it is wise to cut through intolerable symptoms."

"I will hold until I feel able to reduce a small amount. Every tiny cut feels like a cold turkey and reminds me how I felt during the botched crossover."

"Then I think you are on track to keep holding for the time being.  I'm currently at four months in my hold, with a vague notion of going to about 6 months to see what level of stabilisation I can achieve.  I'm making myself do it cause I want to know down the track that at least I've given a long hold a good chance."

" I would hold until your symptoms reduce, then hold for a good four weeks after (or more), given how long you've been tapering and how high a dose you started at, just to make sure your nervous system (central and enteric) really has a chance to stabilize."

" 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 mbullet 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."

" Holds are really important. When someone is tapering by cutting a little more each day it's still important to take the occasional hold where you don't reduce at all. You may have gotten a bit ahead of your brain's ability to heal itself. But I think it will be able to catch up if you treat it gently for a while and don't change your dose. I'd recommend not restarting your taper as soon as you feel better, go ahead and hold for an extra month or so just to allow the invisible healing processes to catch up."

"It hasn't even been a month yet, and I expect you'll need to hold for at least three months before you notice really consistent improvement, so hang in there. 
 
And there will be ups and downs. Don't read too much into them. They would happen no matter what you do. Just stay very consistent, keep your life as stable and regular as possible, keep your meds as stable and regular as possible, and allow your nervous system to balance itself out as best it can. The more stable you are, the smoother your eventual taper will be.
 
Again, I think you may have reached the point that people often do reach, where you just don't have as many options any more if things go haywire. So please don't experiment with tapering faster. Stick with slow and safe."

"I have been holding, holding, holding as per your advice and yes it has been a ride that I had to hold on tight but I am now having windows that are clearer and even a few days of about 95%. But, I do fall back into waves but I to much much lesser degrees and that's what gets me through them. "

"If you are improving with the hold (as expected), I don't know why you would want to start tapering.  Why not wait until the symptoms are gone and then taper.  If you start now, your symptoms will slow the rate at which you can taper, and your quality of life will suffer."

"I'd continue to hold as long as you are improving.  I once held for 9 months.. to good effect. Why have a bumpy taper if you can come off without the pain of withdrawal symptoms."
 
"You don't need to make any more changes for a good time (think 6 months or so), even very small ones.  Please let things simmer down!  When you get symptomatic, you have wanted to updose, or ct.. or some variation.  Please hold onto the fact that the very best thing you can do now is to HOLD and let your body heal.  And IMO, holding is the hardest part of all.  At least it was for me."

"What you suffer from is destabilisation and the best cure for that is stability over time. It's incredibly hard not to do something, anything when we are suffering so badly. But as you have seen so far that only makes things worse. The information describing how our brain remodels itself turned me into a firm believer of healing power of holding. I have to say that after 5 horrible months I'm being rewarded by feeling so much better..."

"A month is not a long hold, especially if you're pretty symptomatic. I wouldn't assume a problem with a hold until after six months there was no improvement.
 
Yes of course most of us get improvement and stability with holds, that's why we do them. But like I say, a month is often not nearly long enough."

"I still find that holds are at least as important a part of the picture as the cuts. Maybe more. Slows me down even more, the longer holds, but I still get to feeling so much better after holding for a while that I know it's good for me to do it.
 
And overall feeling SO much better now that I'm on these low doses. Turtle turtle turtle is working for me still. I hope other people can bring themselves to do it and it works for them too."

"I'm pretty sure that the holds, for me, are a crucial factor in how well I do overall. I notice a lot of improvement with, and for a couple of months after, every long hold. I feel like my body uses that time to catch up and heal and establish a new, better "normal."

"We all will recover is the hope that gets me through the days. From all the countless hours of research and talking to doctors who understand kindling and withdrawl the general concensus is that it will get better with time. You are on the right path just keep going one day at a time. I have made the mistake many times of moving a dose or adding drugs only to make things worse."

"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."

"Holding for 6 months should result in a substantial improvement."

"A sufficiently and very slow taper after holding until stable and maybe a bit longer, should make you able to function and have quality of life while tapering."

"But as we see so often on withdrawal groups, it is not simply about (tolerating) getting to being drug-free. It is about completing the healing process. I learned the concept that the ideal way to heal, and the least painless, is to balance tapers with healing.
 
So if your body still needs a little more of that healing process, from the cases I have seen, it can actually be a faster healing process to take a bit longer and let the process complete while not jarring your nervous system by going off too soon."

"I have noticed a change in the way I feel since I've been holding. It does tell me that crossing over to K and being on it for 3 months and then tapering was not enough time to stabilize on K. So I am now in my 78th day of holding, and I still am feeling change. This tells me that I should hold longer, which I had already planned to do anyway. I will not hesitate to hold a year if I feel i should. And when I do taper, it will be respective of small cuts with sufficient holds. I do not see the need to rush, and that is the position and mindset I now have."

"Unfortunately, there is no fast way out and if you hold for a while to let your nervous system settle and catch up to the changes and then do a slow and steady taper you will be in the best position possible. If you taper carefully you can enjoy a high quality of life , as you go . There are quite a few here who while tapering have held down jobs and maintained a happy and healthy life. "

"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"

"I was very fortunate to have successfully gone on klonopin after what I believe was months off a virtually cold-turkey taper off a large amount of xanax."

"There are many reasons why reinstatements to taper are successful. Crossing to the longer life benzo after reinstating AND getting the right equivalency and more. HOLDING is essential and many are coached to "PUSH" through it upon reinstate. The brain has NO time to settle down."

"Just be careful in your taper off the clonazepam.  If your dizziness and other symptoms increase or are more disturbing, do not be afraid to hold the taper so that you don't suffer in the process."

"When doing a microtaper (smaller cuts but more frequently) people can get ahead of their brain's ability to remodel itself.  The time it takes a brain to heal and remodel, to build new receptors and remove old ones, to turn genes on and off, et cetera, is just not something that we can control or change.
 
I generally encourage people who are microtapering to continue to take intermittent longer holds throughout their taper, just to make sure the brain healing is keeping up with the cuts they are making."

"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!
 
(Well, actually, if we notice the "buildup and not resolve as fast" phase, that's actually the best time to stop and hold, but I don't know about you, but I'm usually too impatient for that.)
 
You've tapered pretty fast--not unreasonably, but not slowly. Now you're down to a significantly lower dose than where you started. It might be time for a nice long hold to allow your body and nervous and endocrine systems time to catch up, heal and rebalance.
 
It sounds like that's what your body may be telling you, and your body is the only real expert on how you need to taper.
 
It's normal to feel pessimistic and bleak during a bout of withdrawal symptoms, even for a really positive person during an otherwise successful taper. It's like we just lose our ability to see the good side of things, like things have never been good, even though logically we know they must have been. That's just another symptom.

Giving your body time to really restabilize and get solid now will make your future taper much easier.

And when you're ready to taper again, I would consider taking intermittent longer holds of several weeks from time to time.

Basically, the takeaway: What you're experiencing is normal. "
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #2 on: May 02, 2022, 06:26:10 pm »
Have other buddies who have been in supposed tolerance/relative withdrawal in that their taper started after symptoms began while on a constant dose seen major benefits to holding? I'm really struggling right now, and I don't know what's happened. I was cruising along pretty well until the last week or so. I did try encapsulating crushed tablets for five days two weeks ago but was having a lot of trouble and discontinued that. The weekend right after that was pretty good with some really good windows (I was holding to try to readjust to cutting/filing tables again), but the following week (last week) was very rough as I started tapering again. Intrusive thoughts and SI have come back, which I haven't had for months. This weekend was very had, and I'm still struggling today. I'm considering another hold, but I wonder if I can expect things to get much better if I hold for a good amount of time as the post from Valley Um suggests since I had symptoms start before I started tapering. Is it possible I could hold for longer and have some of my typical symptoms diminish, making further tapering a bit easier to handle?
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #3 on: May 09, 2022, 10:33:22 pm »
Have other buddies who have been in supposed tolerance/relative withdrawal in that their taper started after symptoms began while on a constant dose seen major benefits to holding? I'm really struggling right now, and I don't know what's happened. I was cruising along pretty well until the last week or so. I did try encapsulating crushed tablets for five days two weeks ago but was having a lot of trouble and discontinued that. The weekend right after that was pretty good with some really good windows (I was holding to try to readjust to cutting/filing tables again), but the following week (last week) was very rough as I started tapering again. Intrusive thoughts and SI have come back, which I haven't had for months. This weekend was very had, and I'm still struggling today. I'm considering another hold, but I wonder if I can expect things to get much better if I hold for a good amount of time as the post from Valley Um suggests since I had symptoms start before I started tapering. Is it possible I could hold for longer and have some of my typical symptoms diminish, making further tapering a bit easier to handle?
Hi hfh,
I'm a long holder of about 4 yrs now I believe and it's been the best thing I ever did. All I can tell you is low and slow.  I have found that tapering extremely slowly is the best way to go. I remain functional and I live my life pretty normally without many issues. I was symptomatic before my taper began and definitely in tolerance as I believe most people are when they begin to taper. I still struggle at times with intrusive thoughts and a little insomnia especially within the first two weeks after a cut but it's nothing compared to what I went through when I tried to taper faster. I believe in holding as long as you need for your body to adjust and believe me it will. I have found that when I would taper to fast I'd end up in trouble with with wicked wd symptoms. Sometimes I would hold for a few months, once I held 6 months but I only benefited from these holds. My body would heal during that time and I would feel normal again. The wd sxs would intensify but then weeks into the hold they would level off and diminish. I think people panic when they hold and start to feel worse, they shouldn't, there is always a lag time with sxs after a cut so if you cut and you feel ok and then cut again too soon the hammer will come down and you will be so sick!! I learned the hard way and if it wasn't for this group and some amazing people I met on lhsg I wouldn't be where I am now. So my best advice is hold as long as you need to heal, you will and when you start tapering again go slow allowing lots of time in between cuts. Everyone is different but I believe going slow and holding is a beneficial way of getting off these types of meds.
Best of luck!
[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #4 on: May 16, 2022, 07:58:12 pm »
[...], so many say holding for too long will just make things worse and doesn't make any sense for those in tolerance WD. Do you think it just depends on the individual? I'm afraid to hold for a long time and get no benefit and be at the same dose still suffering.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #5 on: May 21, 2022, 10:23:52 am »
Have other buddies who have been in supposed tolerance/relative withdrawal in that their taper started after symptoms began while on a constant dose seen major benefits to holding? I'm really struggling right now, and I don't know what's happened. I was cruising along pretty well until the last week or so. I did try encapsulating crushed tablets for five days two weeks ago but was having a lot of trouble and discontinued that. The weekend right after that was pretty good with some really good windows (I was holding to try to readjust to cutting/filing tables again), but the following week (last week) was very rough as I started tapering again. Intrusive thoughts and SI have come back, which I haven't had for months. This weekend was very had, and I'm still struggling today. I'm considering another hold, but I wonder if I can expect things to get much better if I hold for a good amount of time as the post from Valley Um suggests since I had symptoms start before I started tapering. Is it possible I could hold for longer and have some of my typical symptoms diminish, making further tapering a bit easier to handle?
Hi hfh,
I'm a long holder of about 4 yrs now I believe and it's been the best thing I ever did. All I can tell you is low and slow.  I have found that tapering extremely slowly is the best way to go. I remain functional and I live my life pretty normally without many issues. I was symptomatic before my taper began and definitely in tolerance as I believe most people are when they begin to taper. I still struggle at times with intrusive thoughts and a little insomnia especially within the first two weeks after a cut but it's nothing compared to what I went through when I tried to taper faster. I believe in holding as long as you need for your body to adjust and believe me it will. I have found that when I would taper to fast I'd end up in trouble with with wicked wd symptoms. Sometimes I would hold for a few months, once I held 6 months but I only benefited from these holds. My body would heal during that time and I would feel normal again. The wd sxs would intensify but then weeks into the hold they would level off and diminish. I think people panic when they hold and start to feel worse, they shouldn't, there is always a lag time with sxs after a cut so if you cut and you feel ok and then cut again too soon the hammer will come down and you will be so sick!! I learned the hard way and if it wasn't for this group and some amazing people I met on lhsg I wouldn't be where I am now. So my best advice is to hold as long as you need to heal, you will, and when you start tapering again go slow allowing lots of time in between cuts. Everyone is different but I believe going slow and holding is a beneficial way of getting off these types of meds.
Best of luck!
[...]

Hi.

I see this group is kind of dead. Just came back and saw this last post from Thrishy. This post is the truth for me so I'll rescue the group and the post. I have hit a wall at 0.90 [...] so I'm feeling terrible and I'm planning to hold for months again. Maybe 7 months, which was my first hold after a terrible benzo crash into terror. Now the sxs are different. A headache and fatigue that is nearly incapacitating. I manage to keep working but I'm on a brink of not being able to function or work and I'm very scared of that. I hope and pray that a hold at 0.90 will make me feel better eventually. I hope my psychiatrist will support this and if he doesn't I'll find another one.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #6 on: May 21, 2022, 02:19:15 pm »
I completed my taper over 3 weeks ago and am doing great!   I attribute my success to going super slow, never up dosing,  and holding twice when I was under stress and needing to take taper breathers.  The first hold was 5 months during the Covid lockdown.  The 2nd hold lasted one year and 5 months. 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #7 on: May 22, 2022, 10:03:13 pm »
gitfiddle,
thank you for your post...I tapering Xanax -- had to hold for five months between august and January...been tapering again at only 3% a month and feeling like I need to hold again ---- did you find that holding longer allowed you to taper off? 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #8 on: May 22, 2022, 11:39:54 pm »
Hi Grace, Iím not sure how to answer your question because I was determined to get off Xanax regardless.  I held my taper twice because I was experiencing a lot of stress due to the Covid shutdown and some health issues I was dealing with. I just felt that trying to taper with so much going on would be too difficult. 

I do believe though that those 2 long holds gave my body the chance to adjust to the lower dose and even do some healing.  Thatís probably one reason why this hasnít been as hard for me as others, even though Iíd taken Xanax 4-5 times daily for 23 years.

I donít want to give the impression that itís been easy or that I havenít had (and still am) experiencing some withdrawal.  Itís just that itís been tolerable and not the nightmare others have experienced.

Iíll say that I believe itís important not to go backwards and updose.  I think itís better to hold if necessary. 
« Last Edit: May 23, 2022, 12:16:28 am by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Long Hold Support Group
« Reply #9 on: May 23, 2022, 06:10:14 am »
gitfiddle,
thank you for your post...I tapering Xanax -- had to hold for five months between august and January...been tapering again at only 3% a month and feeling like I need to hold again ---- did you find that holding longer allowed you to taper off?

Hi Grace. I believe holds help my brain catch up with the cuts. I'm planning to hold for between 4 to 7 months, and then I'll resume my taper. If you "feel" you need to hold, I'd listen to your body (and brain). No one can know better than you do.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.