The Long Hold Support Group

[[li...]]

Gotta thank you again Valley!!  Don't want to give up but it's weird to think something new would come but praying like the other two times it will go, but leave me stable this time with more time Thanks!!!

[[ca...]]

It is ALL healthy food for me. All organic. Nothing processes, no sugar etc but I eat TONS!!! Also my hormones are clinically very low. Do any of you use bioidentical hormones to help with your symptoms. I have in the past and they helped but haven't in years. No sure what to do.

[[Pl...]]

I have a really stupid question and was hoping someone would be able to simplify answer a response.... I may be making it more complicated then needs to be......

 

I am looking to do a daily micro taper soon where I will be reducing liquid daily..... My question is when people say to hold if they need to do they mean for example " I will be reducing  0.1 ml each day for 1 month equalling 3 percent to start. If I reduce for 2 days and don't feel right does hold mean stop reducing which puts me right back at the original dose or does that mean I can keep reducing as originally planned for the month but don't go any further after that point? 

 

After those 2 days if im supposed to hold means do not reduce then does that mean I have to keep track  of the days i didnt?  because essentially i will not reach that 3 percent until ive done it every day for a month?  very confused with all of this stuff .... Please help....

It can be confusing and yes when you hold, you hold the dose that you are currently on from your daily taper. It helps to have a spreadsheet and write hold on the date you decided to hold. How many days you hold is up to you, but if you find you have to hold often, you can try 2.5% instead. The key is finding your personal sweet spot where you don't need to hold and can cut daily. There is also a hybrid cut and hold method where you cut a small percentage (say 2% for example and hold for 6 days and then cut again).  That method is good for those who find the daily taper lag time too difficult and/or can't find a daily reduction that works for them. Hope that helps a little. --V

 

Both of you lizagal and valley um thank you so much for your explanations..... I kind of understand but still am confused.... I know I will definitely need to be reaching out more as I begin and until I get a grasp of this .... Math not my thing especially with something like this ...... There are others that have been helping me as well so I hope I don't drive anyone too crazy with all my questions......

 

Again thank you so much....

[[...]]

Both of you lizagal and valley um thank you so much for your explanations..... I kind of understand but still am confused.... I know I will definitely need to be reaching out more as I begin and until I get a grasp of this .... Math not my thing especially with something like this ...... There are others that have been helping me as well so I hope I don't drive anyone too crazy with all my questions......

 

Again thank you so much....

 

There is no such thing as a stupid question!! Especially when it comes to benzos  Rest assured that there will ALWAYS be someone here for you on BBs 

 

In the example you give, reducing 0.1ml per day:

Day 1: -0.1 ml

Day 2: -0.2ml ... if ever you felt unwell on day 2 and decide to hold you would stay on this -0.2ml dose (i.e. you are not updosing back to the initial dose).

 

This is the difference between holding and updosing.

 

For the maths, there are wonderful people around the forum ready and happy to help. General taper plans, Titration, Micro-taper support group... and here, obviously!!

 

I hope this helps!!

Best wishes,

Julz

[[NY...]]

Do any of you eat an extreme amount of food? I get slammed still will w/d symptoms eventhough I have been off meds for almost 15 months but I am always starvin . I mean I eat TONS of food and almost constantly. Has anyone had this?

 

Do you have reactive hypoglycemia?  That is a new and horrible symptom of mine that gets 10x worse during PMS. I need to eat every three hours or feel like I will fall over and die. 

[[ca...]]

NYC - I have thought that I do have hypoglycemia - actually it was caught on blood tests years before I ever went on any benzos and my doctors still suspect it but we can't see it on a test.  It feels like I have it all the time as I ALWAYS have to eat ever 2-3 hours (even in the night) but during my period it becomes totally unmanageable - I have to eat constantly in order to maintain at all.  That's why doc is suggesting more hormone cream to help with it.  What works for you??  Do you eat certain foods??

[[Pl...]]

Both of you lizagal and valley um thank you so much for your explanations..... I kind of understand but still am confused.... I know I will definitely need to be reaching out more as I begin and until I get a grasp of this .... Math not my thing especially with something like this ...... There are others that have been helping me as well so I hope I don't drive anyone too crazy with all my questions......

 

Again thank you so much....

 

There is no such thing as a stupid question!! Especially when it comes to benzos  Rest assured that there will ALWAYS be someone here for you on BBs 

 

In the example you give, reducing 0.1ml per day:

Day 1: -0.1 ml

Day 2: -0.2ml ... if ever you felt unwell on day 2 and decide to hold you would stay on this -0.2ml dose (i.e. you are not updosing back to the initial dose).

 

This is the difference between holding and updosing.

 

For the maths, there are wonderful people around the forum ready and happy to help. General taper plans, Titration, Micro-taper support group... and here, obviously!!

 

I hope this helps!!

Best wishes,

Julz

 

Oh Julz..... Thank you so much!  You actually bought something up in your example that made me overlook something.... Ill need to go back to the original person helping me..... Thank you so much!!!

[[NY...]]

NYC - I have thought that I do have hypoglycemia - actually it was caught on blood tests years before I ever went on any benzos and my doctors still suspect it but we can't see it on a test.  It feels like I have it all the time as I ALWAYS have to eat ever 2-3 hours (even in the night) but during my period it becomes totally unmanageable - I have to eat constantly in order to maintain at all.  That's why doc is suggesting more hormone cream to help with it.  What works for you??  Do you eat certain foods??

 

Reactive hypoglycemia is hard to dx, b/c you don't really have low-blood sugar, as I understand it - our bodes are just responding enthusiastically to a dip in blood sugar. 

 

Mine waxes and wanes, based on stress level, hormones, etc.  Again, I've only had it for about a month+, but what has helped so far when it's baaaad =  eating small meals every three hours (not just snacking all day long), avoiding all simple carbs and sugar, and making sure my meals have protein, fat, and a complex carb, like veggies.

 

WR

 

 

[[Be...]]

It is ALL healthy food for me. All organic. Nothing processes, no sugar etc but I eat TONS!!! Also my hormones are clinically very low. Do any of you use bioidentical hormones to help with your symptoms. I have in the past and they helped but haven't in years. No sure what to do.

 

I am in same boat. Same exact boat. No hunger until my taper was over and now I'm slammed with it. I feel unclear in my head and absolutely not calm until I take a Tylenol, which is strangest thing.

[[li...]]

Have to keep saying it all day every day even though I haven't experienced it:  long holds stabilize you so that you can function like a human all day. Not perfect, but at least functional.

 

Not feeling it today--down day with more sxs. Ugh. I'm impatient at 36 days. I know we are all dealing with stuff--two steps forward and 1 1/2 steps back.

[[Va...]]

Have to keep saying it all day every day even though I haven't experienced it:  long holds stabilize you so that you can function like a human all day. Not perfect, but at least functional.

 

Not feeling it today--down day with more sxs. Ugh. I'm impatient at 36 days. I know we are all dealing with stuff--two steps forward and 1 1/2 steps back.

Hang in there!  It's sooo frustrating. Just when I think I'm over it again, I get hit with a past symptom, but it's much milder than before and I'm over 60 days in. I woke up tired and out of it this morning, but it's slowly improving as the day goes on. Stupid unpredictability. That's why I'm holding on for the 3 month mark. One day I feel I can cut again and the next day something pops up which tells me I'm not stable yet. I know stability will come with patience, but patience is tough when you're in a wave. When you're in a window, you think you have it beat and then you experience symptoms again. It will come. The last thing we want to do at this point is make any changes. The crappy symptoms are just healing. Are you having windows diring the day?  If you are journal when you have them and how your symptoms cycle. I find I go through the the same symptom cycle, but less intense and shorter lived each time with longer windows. I'm in this for the long haul just to prove it works. I feel your pain. 

[[li...]]

I'm like you Valley--I want to believe and prove that it works but I keep hearing a voice from the FB forum I was on saying "maybe this is as stable as you're gonna get". Since I only had four days during my five week hold before tapering that I felt "high but functional", I don't know what to expect stabilization to look like. So there are people--just to remind myself--who hold for about 3 months and are able to get to 80-85% and stay there with a slow taper and short holds when sxs ramp up. It's actually happened and actually possible? 

 

I do keep a journal and notice things that are different/better but at least in my case the bad stuff screams louder 

 

So I'm hanging in there, praying that this isn't as good as it gets. Thanks for being there and being real Valley

Grateful,

Liza

[[Va...]]

I'm like you Valley--I want to believe and prove that it works but I keep hearing a voice from the FB forum I was on saying "maybe this is as stable as you're gonna get". Since I only had four days during my five week hold before tapering that I felt "high but functional", I don't know what to expect stabilization to look like. So there are people--just to remind myself--who hold for about 3 months and are able to get to 80-85% and stay there with a slow taper and short holds when sxs ramp up. It's actually happened and actually possible? 

 

I do keep a journal and notice things that are different/better but at least in my case the bad stuff screams louder 

 

So I'm hanging in there, praying that this isn't as good as it gets. Thanks for being there and being real Valley

Grateful,

Liza

That's pretty much life lol. We don't even notice when things are going smoothly but if things aren't right in our lives, that's all we can think about. The thought of tapering for at least 2 more years isn't a pleasant thought, but if it can be done with mild symptoms and no withdrawal, I'm all for it. 

[[li...]]

I'd be ecstatic if it only took me a couple years. The rate I was going would have taken 10. Hopefully this is the trick

[[Va...]]

I'd be ecstatic if it only took me a couple years. The rate I was going would have taken 10. Hopefully this is the trick

I only hope it takes only 2 years lol. At this point I don't care how long it takes. I'm never putting myself through this again. I did the calculation and I lost 42% of my original dose in 6 weeks.  No way out of this but through a long hold and a slow taper. -V

[[ly...]]

 

 

I hear you Valley on the big cuts.  My first cut was about 75% and my second eliminated 50% of the remaining.  I'm lucky I didn't become a basket case!  I then rushed from 1mg to .3125 in about 6wks. worried about some "tolerance withdrawal" nightmare.  I am going to be holding for another three weeks which will make this hold about 8wks.

 

And quite honestly, if I don't feel pretty darn close to 100% in 3 wks I will continue to hold until I do.  I want to take whatever time is necessary for everything to catch up and right itself before I continue with the taper.  After the second big cut last year, I held for 8 months and felt terrific. 

 

Then...slow slow slow liquid micro taper. 

 

I've yet to hear someone talk about having a mild taper experience then having severe protracted.  I would definitely be interested in hearing about it if anyone has had such an experience.

 

 

[[Va...]]

 

 

I hear you Valley on the big cuts.  My first cut was about 75% and my second eliminated 50% of the remaining.  I'm lucky I didn't become a basket case!  I then rushed from 1mg to .3125 in about 6wks. worried about some "tolerance withdrawal" nightmare.  I am going to be holding for another three weeks which will make this hold about 8wks.

 

And quite honestly, if I don't feel pretty darn close to 100% in 3 wks I will continue to hold until I do.  I want to take whatever time is necessary for everything to catch up and right itself before I continue with the taper.  After the second big cut last year, I held for 8 months and felt terrific. 

 

Then...slow slow slow liquid micro taper. 

 

I've yet to hear someone talk about having a mild taper experience then having severe protracted.  I would definitely be interested in hearing about it if anyone has had such an experience.

I haven't seen it either. I'm continuing to hold and noticing some real positive signs today. I think I'll give it one more month. I can even do more if needed, as long as it takes. I know I felt pretty close to 100% before I did the last cut so I know it's possible.  I know I shocked my CNS pretty good. At least I've stayed functional, but it has drained me to the point I need a break.  I believe we can get out with minimal suffering by being patient and not rushing to get off. Once stabilized, it does appear that many are pretty much symptom free on the way down with a micro taper. I've certainly learned how to listen to my body. I almost started cutting again at 6 weeks which would have been a disaster. I no longer care how long it takes if I can live without suffering.  I'm glad you added more evidence for long holds when needed. More need to see the results from those who have done it and had great success. It's the only way to go if you start your taper unstable or the sxs catch up with you. --V

[[St...]]

Well, I believe I might be joining you guys in the Long Hold Group, I started LT five weeks ago, and changed my dosing from four to five times a day, and have not stabilized at all, I really wasn't all that stable before the LT either, which is why I decided to switch to LT.  I held for four weeks and began to slowly taper last week.....001ml every three days, did this three times, and I am in the weeds again.  Bah!!!  I am tapering Ativan which is not easy, but my doc won't switch me over to Valium, so I am stuck with it.  Lots of interdose stuff which makes it hard to know if you are stable also.  But, I'm not giving up, I am going to try a longer hold, and would love to have support in that...so I came here.  Have been reading the posts, and it sounds encouraging, which I needed today as I was feeling pretty down.  My last cut was this morning, so I need to start holding tomorrow....nice meeting all of you....Stella Bee 

[[li...]]

I'll take credit for you being here Stella . Welcome

[[Va...]]

Well, I believe I might be joining you guys in the Long Hold Group, I started LT five weeks ago, and changed my dosing from four to five times a day, and have not stabilized at all, I really wasn't all that stable before the LT either, which is why I decided to switch to LT.  I held for four weeks and began to slowly taper last week.....001ml every three days, did this three times, and I am in the weeds again.  Bah!!!  I am tapering Ativan which is not easy, but my doc won't switch me over to Valium, so I am stuck with it.  Lots of interdose stuff which makes it hard to know if you are stable also.  But, I'm not giving up, I am going to try a longer hold, and would love to have support in that...so I came here.  Have been reading the posts, and it sounds encouraging, which I needed today as I was feeling pretty down.  My last cut was this morning, so I need to start holding tomorrow....nice meeting all of you....Stella Bee 

Glad you're here!

[[St...]]

Thanks guys, appreciate it, glad to be here!

[[Va...]]

More good advice for those struggling to do a long hold:

 

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.

--V

[[li...]]

I'm crying reading that last one Valley!!! It would be so incredible if this works for me. It makes some sense to give your body a break, but then I think "if my body and brain are not happy at this dose now, why will they be in a couple of months at this dose."  I swear if the hold stabilizes me--I have the patience to wait and not be afraid of tolerance--and I feel as good as 80-100%, I will go on every board here and tell everyone--even the protracted a because I was protracted and forced into reinstatement after 3 1/2 years off. That's why I don't think it can work for me most hours of the day, but if it does, you won't be able to shut me up about it.

[[Va...]]

I'm crying reading that last one Valley!!! It would be so incredible if this works for me. It makes some sense to give your body a break, but then I think "if my body and brain are not happy at this dose now, why will they be in a couple of months at this dose."  I swear if the hold stabilizes me--I have the patience to wait and not be afraid of tolerance--and I feel as good as 80-100%, I will go on every board here and tell everyone--even the protracted a because I was protracted and forced into reinstatement after 3 1/2 years off. That's why I don't think it can work for me most hours of the day, but if it does, you won't be able to shut me up about it.

Give it enough time and you'll get there!

[[be...]]

I'm crying reading that last one Valley!!! It would be so incredible if this works for me. It makes some sense to give your body a break, but then I think "if my body and brain are not happy at this dose now, why will they be in a couple of months at this dose."  I swear if the hold stabilizes me--I have the patience to wait and not be afraid of tolerance--and I feel as good as 80-100%, I will go on every board here and tell everyone--even the protracted a because I was protracted and forced into reinstatement after 3 1/2 years off. That's why I don't think it can work for me most hours of the day, but if it does, you won't be able to shut me up about it.

Liza I know you have some ways to go on your hold, but I am thinking, maybe just let it be, and find something else to distract with, because

I had the same thing going on when I first started this third taper, Overthinking and bringing more gloom, then finally I realized I was fighting myself, and

my energy needed to be used elsewhere, is there some hobby you like or something you like to do, even for a little while, because I feel in my heart

that you are going to be OK, once you fully believe in this process.