Long Haulers

[[Ul...]]

Ultra so happy that you are close to being done with this stuff.  I know 10% would probably have worked for me but I started out way too fast and now I have been paying for it.  Wishing you the best.

 

That's ok. You'll pay the benzo debt off soon and then begin to move forward in a positive way. Best to you, too!

[[Ul...]]

I found this group by accident, looks like I belong here. This post ( http://www.benzobuddies.org/forum/index.php?topic=250788.0  ) gives a lot of background. I just learned about Dr Christy Huff from my Promise Peer, and she was a long hauler. She is aparently a member of BenzoBuddies. But my Caseworker from Kaleidoscope got off easily ( http://www.benzobuddies.org/forum/index.php?topic=250742.0 )

 

I am stuck in a terrible W/D hell, and it feels like I'm not getting better by much, I did post in the Long Hold Support Group where they recommmended not reinstating my cut, and to hold until I'm stable, I feel like I am nowhere near stable. I visitied the tapering group for information on micro-tapering, which is what I will be doing from now on. But I don't think I'll be able to handle daily, it may have to be monthly. They recommended I start at 1% once I am stabilized.

 

So here I am, did doing a really slow taper with tiny cuts help you as it appears it did with Dr Huff?

 

I so wish I found this board before I foolishly did a rapid taper from Valium. With it's long half-life, no wonder I had few W/D symptoms.

 

Yep, I'd say to hold until "stable" or at least as stable as can be expected. And, I kind of "know" Christy. Actually, my wife is more involved with her and her advocacy than I am by doing some research for the benzo community, etc. Also, just because it's called "daily" liquid microtapering doesn't mean you have to do it daily. I often hold for weeks between small cuts. It doesn't matter. Just do what "feels" natural at any given moment. Next!!!

[[Ca...]]

I found this group by accident, looks like I belong here. This post ( http://www.benzobuddies.org/forum/index.php?topic=250788.0  ) gives a lot of background. I just learned about Dr Christy Huff from my Promise Peer, and she was a long hauler. She is aparently a member of BenzoBuddies. But my Caseworker from Kaleidoscope got off easily ( http://www.benzobuddies.org/forum/index.php?topic=250742.0 )

 

I am stuck in a terrible W/D hell, and it feels like I'm not getting better by much, I did post in the Long Hold Support Group where they recommmended not reinstating my cut, and to hold until I'm stable, I feel like I am nowhere near stable. I visitied the tapering group for information on micro-tapering, which is what I will be doing from now on. But I don't think I'll be able to handle daily, it may have to be monthly. They recommended I start at 1% once I am stabilized.

 

So here I am, did doing a really slow taper with tiny cuts help you as it appears it did with Dr Huff?

 

I so wish I found this board before I foolishly did a rapid taper from Valium. With it's long half-life, no wonder I had few W/D symptoms.

 

Welcome!  We're glad you found us!  I agree with all of the advice you've been given regarding making small cuts and holding until you feel ready to continue.  Daily liquid tapering doesn't have to be daily- I reduce and then hold 3 days, then make another small reduction.  Little by little, you will get there.  Holding is still progress, your body is healing during that precious time. 

[[Di...]]

No-one has posted on this thread in a while hope that means most are doing better. From the end of Jan to end of Feb I did a very slow DLMT 3.25%.  I've been feeling pretty rough lots of anxiety, depression, palps... Going to hold until I feel better hopefully soon then a much slower taper.  I want a life I feel like I am missing so much with my husband, kids and grandkids.  I know there are others suffering much worse then I am and my heart goes out to them.

[[se...]]

Hello All,

 

Hoping this finds every well!  I like Dianedee am down to one .25mg pill as of March 01st.  It's been slow going,  but one day at a time.  If no one is complaining, that means  most are sx's are tolerable. (or so I hope).

 

I had a scare last week, thought I had melanoma.  Dr. called this morning and told me it was negative, I was so relieved.

 

Take care.. 

[[Di...]]

Seasalt so thankful your test was negative!!! 

[[Ha...]]

Hi all,

 

I qualify for this long haul group too.  I've really been tapering for years now, but I started this last round of taper in September of 2018, from 1 mg of lorazepam to .75 mg.  Held there for a while until spring of 2019, when I started working my way from .75 to .5 mg.  I surely felt that cut, which I made over about six-week-ish period -- but when I tried to go below .5 mg, my body said NOPE, and all hell broke loose.  I held for a very long time (around 9 months), then last fall with the help of a buddy started using a scale to make very small cuts down to .25, where I am now. 

 

It has been a very very rough ride, and I feel every single tiny little cut acutely: severe anxiety, insomnia, jumpiness, jitteriness, brain fog, DR/DP, twitching, and on and on.  I am in another long hold now, since 12/11/20.  I keep hoping if I hold long enough I will get stable enough to start crawling downward again.  But at least I am now at a quarter of the dose I was at in fall of 2018.

 

One foot in front of the other.

 

Haimona

[[Di...]]

Haimona you are going to get there!!!

[[Ha...]]

Thanks, Dianedeedee! I believe we all will, together.  I honestly don't know where I would be without the support of buddies here, support and knowing that I am not the only one going through this.

 

 

Haimona

[[Di...]]

Hi all,

 

I definitely fit into this group. I cut around 6% a month. I went down from 3.5 to .5 mg K from 2013- 2017. Then I stopped there as I was sick of tapering. My cuts had gotten smaller over those years to around 3.5-4% a month. I didn't even think I was ever going to taper again after having what I would call PTSD from the experience. But some months ago I decided to give it another go. Now I'm a month into a 6% a month micro taper. I know it will take me years because I go slow and I want to step off at a very low dose due to how potent K is. But the way I figure it, I stopped tapering and got my life back. It was a huge relief. So much so that I really didn't think I would finish tapering off. And even before I stopped I slowed enough that I began to get my life back before I held. So if it takes a while, I would rather do that and live normally than be in pain or miserable during a taper than jump in an already w/d state. From what I saw years ago when I was here, those people tended to have the roughest rides right behind those who did fast tapers and cold turkeys.

 

What I tell myself is that time is going to pass anyway. If I worry about getting off them, I tend to go too fast and get ill. Then life sucks. But if I just take it easy and go slow, my life is normal and it's not like it's a big deal.

 

Unknown I keep reading your post it gives me hope...I have decided that I have to try to get my life back so I am going to try doing my taper your way.  I hope it works for me.  Thank you for posting.

[[Fr...]]

Hi Everyone-

I have been slowly tapering for 28 months and am at 3mg V equivalent. I am looking to slow my rate again as I am hitting a wall and want to try and be as functional as possible. Would love to hear how you determine how much to slow your rate. I have a fear that slowing won’t help me to function and would love some reassurance.

 

Hope you all are hanging in there and feeling as best as possible.

 

Thank you!

[[se...]]

Hello Jlavogt,

 

I am dry cutting 2.5 percent a week (10 percent monthly).  I am dry cutting.  What method are you using and how much are you reducing?

 

I think listening to your body and reducing at a tolerable rate is most important.

[[Fr...]]

Hello Jlavogt,

 

I am dry cutting 2.5 percent a week (10 percent monthly).  I am dry cutting.  What method are you using and how much are you reducing?

 

I think listening to your body and reducing at a tolerable rate is most important.

 

I dry cut as well. My medication is a powder in a capsule. I do a daily micro taper. Most recently by my calculations it was about 9% a month. I am becoming more sensitive to stress and food and having more burning/pain sensations through out the body the last few week and just feel like I need to slow it down more. My taper feels never ending long but I agree I need to listen to my body.

[[se...]]

I’m sorry you are hitting a wall.  I would slow down and try again in a few weeks.

[[Ul...]]

Hello Jlavogt,

 

I am dry cutting 2.5 percent a week (10 percent monthly).  I am dry cutting.  What method are you using and how much are you reducing?

 

I think listening to your body and reducing at a tolerable rate is most important.

 

I dry cut as well. My medication is a powder in a capsule. I do a daily micro taper. Most recently by my calculations it was about 9% a month. I am becoming more sensitive to stress and food and having more burning/pain sensations through out the body the last few week and just feel like I need to slow it down more. My taper feels never ending long but I agree I need to listen to my body.

 

I'm a long hauler too! About a 6 year taper. My last dose is coming up real soon, so keep the faith...you'll get to your end like all of the other survivors have

[[se...]]

Six years, I am so envious at the moment...congratulations to being so close to being done!!

[[Ca...]]

Hey everyone!

 

I’m just checkin’ in to say hi!  I’m still slowly turtling my way down to 0. I’m amazed that it’s taking me as long as it is to get through this last mg or so of Valium. I anticipate that I’ll be at 1.2 mg sometime next week- which would mean it will have taken me about 3 months to drop a tenth of a mg. BUT, in the meantime I’ve been able to restart my career, which is huge. I am working from home so that is making it A LOT easier to do, but the fact that I’m reentering my field again is a huge accomplishment. I’ve also been able to get to the doctor’s for a much needed check up, even some blood work and an ultrasound at the GYN.  I’ve even went back to the dentist for a checkup and some work as well. And, this might sound silly but I was able to go get my hair done for the first time in 2 years (I’ve been avoiding it because I was worried about the chemicals and salon environment setting my nervous system off).  So, long story short- I’m crawling my way to 0, but at the same time I’m getting my life back 

 

Another thing I’m noticing is that when a wave hits, it’s not nearly as intense as the waves were this past year or so. I really hope I’m not jinxing myself by saying that.

 

I hope you all are doing well. Please keep us posted. We’re here for each other .

[[se...]]

Candice, that is great news!!! You have made great progress!!!  Sounds like your body is adapting to your dose. 

 

I am so happy for you!!

[[di...]]

You're all legends! 

[[se...]]

Diaz... we can only hope to do as well as you did!  Thank you for continuing to support us!

[[Fr...]]

Candice are you still around these days? Would love to hear how you are doing and how you pulled out of your crash last year. I have held for 4.5 months with minimal improvement still bed bound with POta and other symptoms.