The Long Hold Support Group

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Terrified now after reading a thread on holding and hitting tolerance and then not being able to pull out of it. Are there only a few people on BB who held for a few months to stabilize?  It doesn't work for everyone???

[[Va...]]

Terrified now after reading a thread on holding and hitting tolerance and then not being able to pull out of it. Are there only a few people on BB who held for a few months to stabilize?  It doesn't work for everyone???

Don't read too much into that. Even Ashton said to hold as long as you need to stabilize. I posted on that thread. I don't buy it. I had three seizures before I realized I was in tolerance withdrawal and it hasn't hurt me at all,to taper. The thing that kicked my butt was tapering too fast.

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Thanks Valley

[[fr...]]

  Seems Oscar, who started this thread is having second thoughts about tapering now.  Read his plog.  I feel for him, he has struggled so much.  I have held now for 4 weeks and finally yesterday the nausea started to lift.  So long holding is definitely for me.  I hope I don't turn out like Oscar and am unable to get off because I'm on 3 meds to taper.  So sad the medical community can't come up with better answers for us. 

[[be...]]

Free, just want to add my two cents here, I know you will succeed, and yes you have more than one medication to taper, but the Free I know, will and

can do this, I just wrote on Nova's thread, and don't come to this thread, because I started there, but the long holds are what is getting me through this

and just take it daily sometimes hourly, but know that there is an end for you, and I know that you will keep going until you reach your Recovery, I have

Faith in You, and know that it will happen. Prayers and good thoughts to you my Friend. Have no doubts, that is what can hold you a prisoner, just do

what you can when you can.

[[fr...]]

:thumbsup: :mybuddy:

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BeGood can you tell us what the long holds have done for you?  I feel so far from functional and have been holding for 25 days. I see a little lift here and there but still homebound and feel majorly brain damaged. Before I started this last round of trying to taper in October, I felt way more stable than now-was able to drive short distances and walk short distances and get some computer work done but now I feel like I'm damaged beyond repair.

 

Valley--I know you said not to worry about tolerance but you had three seizure in tolerance. Isn't that a bad thing?

[[be...]]

Lizgal, the long holds have allowed me to have a somewhat normal life, as you know that was not the case with the first two tapers, it was beyond

horrible, and I knew if I was ever going to get off of V, I would have to do things differently, I was never advised by the idiot Doctor that almost killed

me during my first two tapers, it was a Doctor in ER, the last time I got all the way to 0 and thought I was OK, having major problems, but my own

doctor never explained nothing until this kind Doctor asked me, why in the world was I torturing myself by doing such a fast taper, and he told me to

reinstate to 5mg stay there, and then I needed to change Doctors, and work it out for myself, and that is what I did. My GP allows me to go my pace

and Liz it is like night and day, I cut so much that I have decided on, and then I hold, I have held as long as 4-6 months if I wanted, just decided I had

to be the Captain of this ship, and now tomorrow I will be 1 month of holding and another to go, and then will decide for sure if I hold longer or not.

Now saying all this I do have blips of sx's, but something I can work with and still have quality life, I just can not go by anyones schedule, I will do this

my way and plan to cut my dosage down when I restart taper in half, as the percentage goes up when in lower doses. Best thing I can say to you, just

decide what you really want and sounds like you want it to be better and it can be, but you have to decide how you want to do it. Holding for you until

you feel better is my opinion. You are not wasting time, but those who are sitting on the fence and not even doing anything, are wasting their time

and at least you are trying. You can do this, be kind to yourself and throw your calendar away.  Also builder also went slow and

and he is doing fine and speak of this and others have done well too.

 

 

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I've long since cared how long it will take to get off. I spent 2010-2012 in hell with two Ashton tapers and am back here again because an idiot doc in the ER gave me a stomach med that threw me back into withdrawal in December 2014. Been trying to microtaper like 1% a month and still crashing so a dear benzo friend said why not try a long hold. This is the longest ive ever held (less than a month) because I was told on another forum if you can't stabilize at a certain dose in s couple weeks that meant you were undrtdosed and would be unstable all the way down and you need to taper before the two month mark because of tolerance. I am so ridiculously kindled from all of the up and down, in and out of the last fifteen months that a long hold makes sense but was hoping that a month would be enough. So afraid that everyday will be "oh dear God I've hit tolerance"

I want quality of life and believe it's got to be possible. I'm only on 1.20 mg klonopin and my doc doesn't understand why I can't drive, ride in a car, can't walk or work on the computer.  have such bad DR, insomnia etc and wants me to updose. I want to give a long hold a try and pray I can stabilize. Totally don't care how long this takes if I can get to 70-80% functioning

 

Thanks so much for sharing your story!!!

Liza

[[be...]]

Liza, hold for as long as it takes to get some quality of life back, and not get tied up with a certain time limit, and it is ok to listen to advice, but everyone

is different, so let those that say something happens and such, let them blow air, this is your life and your taper. I know you will be ok. Time is the

key, and listening to your gut, the good gut. Best to you always.

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Thanks BeGood!!

[[os...]]

  Seems Oscar, who started this thread is having second thoughts about tapering now.  Read his plog.  I feel for him, he has struggled so much.  I have held now for 4 weeks and finally yesterday the nausea started to lift.  So long holding is definitely for me.  I hope I don't turn out like Oscar and am unable to get off because I'm on 3 meds to taper.  So sad the medical community can't come up with better answers for us.

 

Hi freeme,

 

The reason why I am having second thoughts are because;

 

a) I have been on this drug for exactly half of my life.

b) I tapered 70% in 7.5 months and that was way too fast and has given me plenty of bad withdrawal experiences

c) I live with a 78 year old (my ex) and I am pretty sure I am going to lose what are, potentially, his last few years.

d) the prognosis for a long term user to withdraw is pretty bleak.

 

I just hate the thought of tapering for 3 more years and then potentially having more years after that to recover, I have been at this 4.5 years already.

 

I am talking to my doctor about this, there is no where written in law that one has to come off these drugs, plenty of people stay on I am sure.

 

This is not to say I would stay on forever but I know what mistakes I made this time around and I know that if I were to reinstate and taper again later on, I would have a much better idea of how to go about it.

 

It really all depends on whether I can tolerate the rest of this taper or not, I know everyone suffers but I seem to have really strong mental symptoms and it's incredibly hard to go through it, the worst part is it's really painful now at this so-called lowish dose and I literally might have to concede defeat.

 

It's easy to say I don't care how long it takes to get free, the fact of the matter is I DO care as I really hate the thought of spending more than 3-4 more years at a taper that does nothing but bring me misery.

 

For me it's starting to get a bit ridiculous and I am now starting to think of my quality of life, I was fine ON the drug, all my problems started as soon as I decided to taper off.

 

It's a catch 22, I do not want to throw away 4.5 years for nothing but I also do not want to be miserable and in distress for another 4.5 years...

 

I will be talking to my doctor in a month or so but if I cannot make this taper work after this long hold, then really, other than being utterly miserable with no life for the next Lord knows how long, the only alternative I see is to go back on, I was on a low enough dose to be able to updose later if need be and the next time around, I would know to reduce far slower and therefore maybe do a complete taper within 3-4 years (I have only been at this 4.5 years due to the holds I have used).

 

Who knows, when I do taper again it might not be as bad but I am not holding my breath on that and to be honest, after 4.5 years I am seriously starting to wonder if this is worth it any more.

 

 

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So OSCAR are you just going to stay at the level you are at?  Why does everyone talk about tolerance?  My doc says he's had people on benzos for decades who never change their dose or go into tolerance. Maybe they don't realize it

[[os...]]

 

So OSCAR are you just going to stay at the level you are at?  Why does everyone talk about tolerance?  My doc says he's had people on benzos for decades who never change their dose or go into tolerance. Maybe they don't realize it

 

I honestly don't know yet lizagal, I would not stay at this level, no, I would either taper off or reinstate.

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Oh I'm sorry--I thought I read that you took a year off and you've been stable so that's why I was surprised you were talking about updosing. Sorry for being nosy

[[os...]]

 

Oh I'm sorry--I thought I read that you took a year off and you've been stable so that's why I was surprised you were talking about updosing. Sorry for being nosy

 

I was stable but then I had a pretty stressful trip to the UK over Christmas and when I got back my doctor told me he was retiring and my anxiety came back, I guess the stress of all that got to me and set me back.

 

Even if stable, it is still really important to stay away from stress but of course life stuff happens, it's not always avoidable. I guess I had a wave, my first and it set me back a bit, I am slowly recovering from it now.

 

 

[[fr...]]

  I understand, I really do.  I wish I didn't have the physical symptoms I have or I might consider staying on also.  I am suffering trying to taper and I was suffering while on a higher dose so I don't see much hope for me other than to try to taper off.  This is my first taper though so hopefully I can do better later on down the line.  I am also a pain management patient and have been on other drugs and I"m sure they play a part but for now, I'm holding and see where I am in a few more weeks.  I wish you only the best whatever you decide to do.

[[os...]]

 

  I understand, I really do.  I wish I didn't have the physical symptoms I have or I might consider staying on also.  I am suffering trying to taper and I was suffering while on a higher dose so I don't see much hope for me other than to try to taper off.  This is my first taper though so hopefully I can do better later on down the line.  I am also a pain management patient and have been on other drugs and I"m sure they play a part but for now, I'm holding and see where I am in a few more weeks.  I wish you only the best whatever you decide to do.

 

Thanks freeme.

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I'm sorry to be such a spazz, but how do I know if my holding is helping or if I'm getting worse from holding?  Certainly don't feel better after 26 days of holding.  I know many of you have said 2-3 months, but did things morph for you?  It's like I can see a few things that are better but other things are worse, so I'm no closer to stabilization.  My friend told me things aren't linear in a hold just like they aren't when you're tapering.  I know I've been way worse but today I feel like my brain is hamburger--very hard to concentrate like through mud-- and really hating this drug.  Just wish I could get back to baseline when I could count on mornings being crappy, but then by noon can eat and shower and then work in the afternoon and walk the dog and drive a bit.  Haven't been able to do much but walk around the house and do a little thing here or there and then my brain gets overwhelmed.  Gotta get off the computer.  Again, sorry to be a spazz but just trying to hold on to this getting better when nothing has made this taper better to this point.

Thanks

Liza G

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ValleyUm--I read on another thread that you felt worse at like 3/4 weeks and you were wondering if a long hold is a good idea.  People on the thread were saying long holds are bad. But you stuck with it and you're better at 7 1/2 weeks?  Terrified I'm digging a bigger hole for myself 

Liza

[[no...]]

I'm sorry to be such a spazz, but how do I know if my holding is helping or if I'm getting worse from holding?  Certainly don't feel better after 26 days of holding.  I know many of you have said 2-3 months, but did things morph for you?  It's like I can see a few things that are better but other things are worse, so I'm no closer to stabilization.  My friend told me things aren't linear in a hold just like they aren't when you're tapering.  I know I've been way worse but today I feel like my brain is hamburger--very hard to concentrate like through mud-- and really hating this drug.  Just wish I could get back to baseline when I could count on mornings being crappy, but then by noon can eat and shower and then work in the afternoon and walk the dog and drive a bit.  Haven't been able to do much but walk around the house and do a little thing here or there and then my brain gets overwhelmed.  Gotta get off the computer.  Again, sorry to be a spazz but just trying to hold on to this getting better when nothing has made this taper better to this point.

Thanks

Liza G

 

 

When you are having a bad spell, healing is still going on. People typically find that after a bad spell, symptoms improve and often go away forever. Try to remember this when times are hard.

 

 

 

Benzodiazepine Recovery Tips http://www.psychmedaware.org/recovery_tips.html

 

 

Love Nova xxx  :smitten:

[[os...]]

 

This is a good reminder Nova. 

 

I hope we all start to feel better soon.

 

I had a pretty good day yesterday. 

 

Happy Easter long holders. 

[[Va...]]

BeGood can you tell us what the long holds have done for you?  I feel so far from functional and have been holding for 25 days. I see a little lift here and there but still homebound and feel majorly brain damaged. Before I started this last round of trying to taper in October, I felt way more stable than now-was able to drive short distances and walk short distances and get some computer work done but now I feel like I'm damaged beyond repair.

 

Valley--I know you said not to worry about tolerance but you had three seizure in tolerance. Isn't that a bad thing?

Hi Lizgal. My seizures were related to the drug interaction from long acting opiates and benzo combination. Once my doctor figured that out and put me on short acting opiates, I didn't have a problem. Have you been to the surviving antidepressants site?  You may find a lot of answers to your questions given your polydrug history. They really advocate long holds over there. They also advocate much more cautious tapers for harm reduction. I won't give you advice on what to do, but my opinion is hold as long as we need to give the CNS time to adjust. The tolerance issue is discussed as in depth as I've ever seen at surviving antidepressants and they believe it is a myth.  Hope you find some answers and stabilize soon!

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Thanks Valley. Sometimes hard to distinguish side effects from withdrawal effects too. I definitely know certain things are withdrawal but just not sure how "stable" will look for me. This is the highest dose I've ever been on. Thanks for the recommendation

[[Va...]]

Thanks Valley. Sometimes hard to distinguish side effects from withdrawal effects too. I definitely know certain things are withdrawal but just not sure how "stable" will look for me. This is the highest dose I've ever been on. Thanks for the recommendation

 

No problem. I've sure changed my mind about tapering after reading the info. there. They believe you should have no symptoms while tapering. Or very minimal at the least. I think stability is subjective but for myself, I was 100% stable before my last cut indicating I should have held longer (up to 6 weeks) as I cut too rapidly and that little cut pushed me over the edge.