anyone find a cut helps when a long hold didn't

[[no...]]

I've been holding at 6MG for over three months now and recently well few weeks or  possibly  longer feel a lot worse no stability at all. i I'm in hell with excruciating symptoms and feel that taking my doses are possibly  imaking things worse during the day. i'm in hell with excruciating symptoms and  dose three times a day. I don't feel so bad with the PM dose I'm stuck between a rock and a hard place whether to cut again now sitting where I am is no help at all. i'm scared that's  curtting  my dosage down, may   make it even worse. 🥲

 

 

[[Fa...]]

Hi Nova,

I know we are all so different.  And, I also know that we have to try to feel this out for ourselves which is difficult when we are in this state.

I have been highly symptomatic since the beginning.  You can look at my history.  I did a two month hold…and, there were no improvements for me.  I did another month hold after trying again to taper when my symptoms came back in like a freight train.

I do believe holds help many.  I’ve read the stories.  I got to the point where I asked myself is this drug just needing to get out of my system?  And, when I reduce, will I be that much worse than I am already…because I am quite bad.  Also, is it at a point where I just have to get through the reductions and face the music?  Not push too hard and create any more chaos for my NS, but push just enough.  They were tough questions, and no one could help me with it.  Too many variables to compare with others…comparing just doesn’t work.

So, I decided to start the taper again.  I was only able to reduce by 1.4%/mth initially prior to holding.  I tried 2.8%, and I felt I couldn’t cope….held again.  When I decided to move forward, I decided to base my reductions on every two weeks if I could.  I couldn’t do a symptom-based taper because my symptoms never subsided and were too severe.  So, I based my taper on time.  If I wasn’t going to be able to read my body, I had to look towards how long should my body take to ‘adjust’ to the reduction.  This is because I am injured….not just dealing with WD.  So, I started with 2%/14 days, then 3%, etc.  So, that’s what I’ve done.  If I need an extra few days or a week, I would take it.

I’m on my 5th reduction.  I am going through the same symptoms…just as always, I have really difficult days and less difficult.  But, I am not worse than I was before I began this.  Of course, things change on a dime.  I know this.  I do have new symptoms, but I can’t even know for sure it is because of tapering because there are no absolutes in this.  One of these new symptoms started before I even began to taper again.

So, I am moving down slowly, and I’m suffering just as I was.  My symptoms are really quite in-line with CT symptoms.  I have AKA…pacing and internal/mental.  My AKA has not gotten worse.  My pacing has actually decreased.  Internal/mental symptoms are my largest problem in this, but I have a whole slew of physical symptoms now, too.  And, I just felt like I need to move forward…the damage has been done already.

Looking to a new baseline is logical and always worth trying first.  I do believe that when things are so bad.  But, when it isn’t working, and you sense that maybe you just need to slowly get this drug out in order to give the body a chance to heal, for me, I chose this option.

The question does become is it the drug for me?  Is it causing the problems?  And, the decision is tough.  I’ve ‘seen’ many do a ‘perfect’ slow taper and end up suffering greatly when they finally jump.  I’ve ‘seen’ the opposite.  I’ve seen CT’s end up being a blessing.  I’ve ‘seen’ them not go well.  I think we have all seen every scenario by now.  And, we try to compare.  We can’t.  We can do our best to give ourselves the best chance of getting through this responsibly and by making the best choices we can at the time we are making them.  And, it always seems to be a crap shoot.  No guarantees.  Trial and error.

Most of us are complicated cases in our own way.  But, even the simplest of cases don’t always go well.  So, is there really any such thing as a ‘simpler’ case?  Not so sure anymore.

You may get some form of ‘relief’ from deciding to reduce again.  Both physiologically and psychologically.  In my opinion, three months is a good amount of time to see if a hold will show benefits coming from it.  Some will disagree with me.  If you are getting worse, moving forward again is an option.  It has ‘worked’ for me…meaning, I am reducing and I am not worse off for it.  Not so far.

I take two doses/day…am and pm.  My am dose gives me problems.  My pm does not.  So, I relate to you there.

I should probably note my symptoms in my history to indicate what I am suffering with.

I just wanted to let you know what has happened to me.  It may help, it may not.  But, only we can make the decision as to what it right for us.  It takes courage…but, we have what we need inside us.  Doesn’t feel like it…I know.  But, decisions need to be made by us.  We can hash it out with others which may help us to find the courage to make the decision either way we decide to go.

I edited this to state one more thing I forgot…I do get relief after a reduction.  It doesn’t always fall on the same days, but, there is a change.  I have my level 10 days within them, too.  So, my answer to your question is yes, I have found some relief in reducing again.  Doesn’t remove having to go through the rest of it, but it shows me that I’m doing something ‘right’…even though I can’t explain the why’s or how’s exactly.

Sending you Much Love.

Warmly,

F

 

[[no...]]

thank you, Faith for  taking the time to post such   a detailed reply ❤️ it's really appreciated.. 💕

Nova 

 

[[Fa...]]

I, also, wanted to add…maybe I was able to do what I did because I held for a while?  Maybe, if you choose to reduce again, it will be quite a bit more manageable?  You will only know if you decide to try.  Maybe you are feeling worse because your body is ready to move forward?  All legitimate questions.  You will know the answer if you decide to try.

And, my first reduction when I re-started was a bit of a shock for me, and I think I psyched myself out. Don’t know how I couldn’t have done that, really.  Now, I just say to myself…you can’t let fear stop you ‘cause your always afraid anyway.  And, you can’t let the symptoms stop you because you’re always symptomatic anyway.  And, I jump again.

You’re welcome, Nova. ❤️ I hope it gives you another perspective.

[[he...]]

Holds never worked for me. I had to keep tapering no matter what at a rate that felt the least bad. Some of us will never benefit from a long hold. That's just the way it is. We have to do the best we can to just get off of this crap as quickly as we can handle.

Also, in the same way, going slower does not always help when symptoms seem tough. I was really struggling last summer and moving at around 5%/14 days, after slowing down from about 5.5%. I then tried to go even slower, hoping that would help. It did not; it made things even worse. So I did the opposite. I went faster, and ended up settling on 8.5%/14 after cutting linearly for awhile, and I was no worse off. In fact, I was better, because I knew I would be off sooner and that thought gave me a lot of motivation and hope.

This is just my own experience, but I've talked to others who kept slowing down and suffered immensely. Some benefit from a hold; some do not.

[[De...]]

@[he...] how did you cut linearly? When I’m the wean and how? I am currently cutting at about 3.5% every two weeks and am still having all the symptoms. I was debating cutting slower but maybe I should speed up. It’s such a crap shoot. 

[[he...]]

@[De...], I just started cutting around .0012 mg per day for awhile until I couldn't anymore. That percentage level when it got hard was close to 9%/14, so I started moving at 8.5% and was no worse than at 5%.

You have to be willing to try things, because your body is constantly making adjustments, and things can and do change as you go along in your taper. Sometimes it can handle a faster speed. Sometimes you need to go more slowly. I found both to be true in my taper. By the end, I was moving at 10.25%/14.

[[or...]]

How much did you cut @[no...] That was my first thought, seems if you cut too much, it would take longer to stabilize.  I remember, yes I actually remember something that my first cut/taper was done at around 11%.  That was too much, and I was very stressed, didn't know what to do, then I found BB.  I got help, 2 different opinions on what to do.  Whether to updose, or hold longer, I did choose the 2nd suggestion, and sure enough I did stabilize finally.  I was starting with just 1 mg of C.  So after I felt good enough, I also started to know what stable even meant    It doesn't mean perfect, but it means going about my  usual tasks, and especially not flying off the handle so easily. So then I had my beginning to taper just 3% which since I hold for 2 weeks, give or take a day usually, I am tapering just 6% a month.

It's working very well, although this last time, same 3% but after 14 days, I've had more wd sxs, but nothing that slows me down too much, mostly insomnia, then a little achy'ness in my left leg, that's let up now.  I did spend more time with friends, and did get more anxiety.  That's a biggie as I stay back from people in person as I feel so worried what they'll think of me.  I say I don't care but it's not true.  I want to be patient with others, but I have to take care of me as well, so I spend a little time with others, play nice, then am always glad to come home to my own, little place denise

 

[[Fa...]]

@[he...]  I appreciate your input.  It helps me feel validated in my decision and reasoning in conjunction with my experience thus far.

Thank you.

[[he...]]

You're most welcome, @[Fa...].

You had to deal with exactly what I did: not being able to read your body clearly because distressing symptoms were always present. In that unfortunate case, if you've tried slowing and holding to no avail, I believe you're best served by moving with purpose to get off the drug as quickly as you can handle. Ashton echoed this fact for those that already have sxs before tapering, and that's what happened to me. And you said it perfectly that you were not only dealing with wd but also injury, just as many of us are. Withdrawal is bad, but benzo injury just multiplies the badness exponentially.

[[Fa...]]

@[De...]  Some will not be able to go through their taper without uncomfortable symptoms…even stronger than uncomfortable.  I think that is what makes the topic of holds difficult.  It may be the expectation from a hold…I know it was for me, initially.

I think @[he...] is correct.  Sometimes it’s a matter of trying different things as our body and how it reacts can change.  I know I have experienced that.  I can’t make sense of it, but I see that it has happened.

In reference to your feeling it at 3.5%…you may feel exactly the same at 4 or 4.5%…you can experiment for one cut to see.  I had one reduction at 2% that felt worse than one I did at 3%.  So, I just did 4%…so far, no real difference.  My symptoms have been the same.  I’m not saying I’m comfortable…but, symptoms are not worse.  I am trying different things out.

 

[[De...]]

@[Fa...] @[he...] thank you for the input. I am so afraid to experiment because I felt the awful things ct does and I cannot go back there. I did start at a taper rate of 10% of dose every 2 weeks. Then I got scared when I didn’t start feeling better so I slowed to 10% every 3 weeks, then 5% every month now 3.5% every two week. All are not making me feel better. I don’t want to get to the end and feel like I’ve went ct again. This is all so scary. 

[[Fa...]]

@[De...]  I know exactly what you mean.  I've experienced the CT thing, too.

When you say you got scared when you didn't start feeling better, do you mean as you tapered?  You expected to feel better as you tapered the Clonazepam?

[[he...]]

I know it's very scary, @[De...], because when symptoms get worse for us, that doesn't mean our heads just hurt a little more or our stomachs are a little more upset... So I get that. But, being unwilling to try things can keep you in a terrible state of affairs for weeks to months longer than you need to be. It's a tough situation, I know.

[[De...]]

@[Fa...] @[he...] thank you. Yes I meant start to feel better as I weaned. Is that a crazy idea? Were you able to work while you weaned? 

[[Fa...]]

@[De...]  It is optimistic!  I feel that if you continue to look to feel better as you reduce, you may be doing yourself a disservice in getting your taper moving along.  And, you may be setting yourself up to feel defeated when you are not defeated.  The goal is to taper and remain stable and functional with minimal discomfort.  If that doesn’t happen, it is not that you are doing anything wrong, it’s just how your body is responding.

I understand your fear about feeling what you felt during the CT.  Taper at the pace that feels right for you, but perhaps be a little more open about not feeling better as you taper but rather expecting to feel some discomfort to a manageable degree as you taper.  This is not a CT schedule you have begun…it is a slow taper.

No, I am unable to work.  Many can and do.  Many cannot.  But, this is your journey.  I feel all tapering schedules you have tried are reasonable and safe within guidelines.  Perhaps just adjust your expectations of how you will feel so you won’t feel as though it is not going well.  You may very well feel better in time as you get lower, but allow yourself the room for some discomfort because it is normal if that happens.  Perhaps stay at what you are doing now which is conservative…or, you can go slower if you want.  Whatever you feel comfortable with.

If you would like more input on this from others, you can create a post on the tapering board.  It may be really good to get others’ insights and experiences so you have a better understanding of what you may expect as you move forward.

Warmly,

F

[[or...]]

12 hours ago, [[D...] said:

@[Fa...] @[he...] thank you. Yes I meant start to feel better as I weaned. Is that a crazy idea? Were you able to work while you weaned? 

I've felt better, even think there is some healing going on, maybe a fog lifting, but that's healing in my opinion.  I also just started having some weird pains in my leg, which are almost gone today. I don't know if the topical magnesium did it or just time.  I thought once I had pain, it would not go away for months or years.  Some folks are suffering so much, I just expected it to maybe not matter that I was tapering just 6% a month.

I don't know, but one day at a time I guess.  I've held the last dose, because of the leg aches/pains, for 13 days now, and feel so much better this a.m. I think I might be able to taper again.  We'll see though as I seem to be really patient with this slow taper since I had horrific results from a CT years ago, and then a "too fast" taper with an MD 2 Summers ago. Denise PS forgot to mention my whole life felt like "hope entered in" and I had something to look forward to, more, much more quality of life.  I think believing that has made me feel like I am healing.  Maybe just pie in the sky, but better in the sky than no pie at all

[[he...]]

2 hours ago, [[o...] said:

Maybe just pie in the sky, but better in the sky than no pie at all

I want pie...

[[or...]]

So apropos .gif didn't show up for me first time I saw this, glad I came back and looked again

 

[[ia...]]

 

@[no...] YES! It's so interesting you brought this up... 

We’re in different situation (but for purposes of relating to your question and this thread- stick with me): I was tapering off both Diazepam/Alprazolam for about 10 months. Jumped off the Diazepam in June.

My last significant cut on the Alprazolam was July 1 2023. I went from .20>.12 mg Alprazolam. I held here for four weeks. Typically, with a cut I would expect to have WDs that first and second week, level off the third and fourth week. For some reason with the last cut, the WDs hit HARD the fourth/fifth weeks. Symptoms did not seem to be improving for weeks, and nothing was changing, so I tried something that at the time, I truly thought wouldn’t work – it was a hail Mary, but I had to try.

Last Wednesday, I decided to try an 'experiment' and reduce my .12 mg > to .06. I knew this would be a ‘big’ cut as I was getting lower. I made the cut to .06... and was fine. No real significant uptick in symptoms over the following 24 hours after that dose.

The next day (Thursday) came around and when it came time to take my dose, I thought: "I can go longer." I simply decided not take my dose, thinking I would just TRY to jump. If I needed to 'reinstate' and take my dose Friday, I could.

Friday turned into Saturday; Saturday into Sunday and so on. Today is Wednesday, a week later. My last dose of Alprazolam was last Wednesday August 9th. Other than very little sleep, I’m doing ok.

 

[[no...]]

7 hours ago, [[i...] said:

@[no...] YES! It's so interesting you brought this up... 

We’re in different situation (but for purposes of relating to your question and this thread- stick with me): I was tapering off both Diazepam/Alprazolam for about 10 months. Jumped off the Diazepam in June.

My last significant cut on the Alprazolam was July 1 2023. I went from .20>.12 mg Alprazolam. I held here for four weeks. Typically, with a cut I would expect to have WDs that first and second week, level off the third and fourth week. For some reason with the last cut, the WDs hit HARD the fourth/fifth weeks. Symptoms did not seem to be improving for weeks, and nothing was changing, so I tried something that at the time, I truly thought wouldn’t work – it was a hail Mary, but I had to try.

Last Wednesday, I decided to try an 'experiment' and reduce my .12 mg > to .06. I knew this would be a ‘big’ cut as I was getting lower. I made the cut to .06... and was fine. No real significant uptick in symptoms over the following 24 hours after that dose.

The next day (Thursday) came around and when it came time to take my dose, I thought: "I can go longer." I simply decided not take my dose, thinking I would just TRY to jump. If I needed to 'reinstate' and take my dose Friday, I could.

Friday turned into Saturday; Saturday into Sunday and so on. Today is Wednesday, a week later. My last dose of Alprazolam was last Wednesday August 9th. Other than very little sleep, I’m doing ok.

I'm saying hail Marys too 🙏 I cut  .5mg yesterday, hope it's not a mistake 🙏
Nova

[[ia...]]

5 hours ago, [[n...] said:

I'm saying hail Marys too 🙏 I cut  .5mg yesterday, hope it's not a mistake 🙏
Nova

Sometimes we need to take leaps of faith... thinking of you as you navigate this cut. Keep us posted! 

[[no...]]

14 minutes ago, [[i...] said:

Sometimes we need to take leaps of faith... thinking of you as you navigate this cut. Keep us posted! 

It's definitely a leap of faith 😊Will do and thank you ❤️

[[Fa...]]

32 minutes ago, [[i...] said:

Sometimes we need to take leaps of faith... thinking of you as you navigate this cut. Keep us posted! 

Yes, @[no...]…keep us posted, please!  If you start to feel afraid, reach out!  I know for me, sometimes I would feel as though the cut was creating a wave…but, sometimes, I was just having a wave…period.  I keep the best notes I can…I rate each day…and, I saw that before I starting cutting again, my ratings were no better than when I was.

Warmly,

F

[[Fa...]]

@[no...]  How are you doing?  I wanted to check in with you.

Warmly,

F