Long Haulers

Hi all!

 

This support group is for those of us who have needed to taper at an extremely slow rate, at times below the “10% per month” recommended pace.

 

A little about me- I was placed on Xanax for insomnia in 2014.  I was prescribed it and took it nightly only, for 5 months. I tried tapering off of it, and the interdose withdrawals were so hellacious, that I couldn’t do it. My doctor tried to gradually cross me over to Diazepam, but midway we had to stop because the exchange rate we were using was too high (too much Diazepam in exchange for the Xanax). So, I was left needing to complete two tapers- the rest of my Xanax, and then the Diazepam. I finished my Xanax taper in 12/2016, and have been tapering the Diazepam since 01/2017. I’m down to 1.4 mg of Diazepam (from 11 mg), and I’m currently on a long hold while we complete a move and I have some dental work done.

 

I’m a mom, I have two kids and two step kids. I work from home teaching ESL online. My withdrawal has been very challenging since May of this year (I’m not able to drive anymore, and that has been so incredibly dehabilitating). I am tapering so slowly because my body literally cannot handle anything faster.  Before I began my hold, I was tapering roughly 5% per month. I have to retain as much functioning as I can to be a mom to my kids.

 

My vision for this group is to unite us long haulers so that we can support each other through our tapers. This group is right for you if your taper pace is super slow, and it’s taking (or will take) years to come off of your medication.

 

“Your speed does not matter, forward is forward.”

I am right there with you!  I started on .25 mg twice a day back in December of 2019.  I began my taper in April of 2020, and I am really struggling.  I am making ridiculously small cuts once a month and it is really impacting me.  I do not want to cross over to another benzo if I can help it.  At this rate it will take three years to get off.  Feeling discouraged, but I still have to work and maintain a life.  Not only am I experiencing withdrawal, I am also having side effects from the drug.  This has been a nightmare from the start.  I had interdose withdrawal for three months then it just stopped.  I do have it when I make cuts, but it has been barable so far.  I guess you could say “I’m in it for the long haul too”!

I am right there with you!  I started on .25 mg twice a day back in December of 2019.  I began my taper in April of 2020, and I am really struggling.  I am making ridiculously small cuts once a month and it is really impacting me.  I do not want to cross over to another benzo if I can help it.  At this rate it will take three years to get off.  Feeling discouraged, but I still have to work and maintain a life.  Not only am I experiencing withdrawal, I am also having side effects from the drug.  This has been a nightmare from the start.  I had interdose withdrawal for three months then it just stopped.  I do have it when I make cuts, but it has been barable so far.  I guess you could say “I’m in it for the long haul too”!

 

I completely get everything you’re saying. I experienced the same thing when I began my taper. I was only taking it at night (as prescribed for insomnia), so switching out my benzo (Xanax) for another one (Valium), and evening out my dosing schedule so that my blood levels remained consistent was a huge help for me, even though I got stuck on both at the same time and ended up with a partial cross over.

That’s really awesome that your interdose withdrawal quit on its own.

 

I’m so glad it’s been bearable for you so far!  Keep going, your body knows what it needs. One thing this process has taught me is to trust my body. I’ve also embraced the opportunity to “throw out the calendar” and just focus on quality of life as I taper down to zero. I do believe that we heal on the way down if we take it slow. All of this time spent tapering is not for “nothing”. Healing is happening every step of the way. 

I guess you could call me a long hauler.    I've been at this now for 2 years overall and it looks like at least 1-2 years to go - can hardly believe it.  I'm grateful for where I am at right now, though, as I am functional for my kiddos ATM.  Trying to keep it that way by slowing as I go; however, if it turns on me, I'm not sure that I will keep as slow of a pace.  I have read through hundreds of stories and everyone is so different.  I wish we understood this more. 

 

Candace, you are pretty functional with exception to driving?  Is it dizziness that keeps you from it?  I wasn't able to drive for a while when I was still on Klonopin but then it seemed to pass and I was able to again.  Are you in a hold now or just tapering ultra-slow?

 

Seasalt, I was also having I/D withdrawal even on Klonopin and I am pretty sure now, adverse reactions as well.

Hi there

 

Great idea for a group!

I am really struggling with cuts. I am on around 2.85 diazepam (maximum 4.5 for a week or two) and really pretty ill (to be fair I was when I started). I have done this before but was on three times the dose when I started. Even a minor reduction gives me cortisol rushes, more nightmares and DP. Question is whether really long holding (over 1 month) is really tolerance by another name. Also I feel i will be lucky if pharmacist agrees with long holds, they are questioning my extended use. Fortunately I have a drugs counsellor who is suggesting longer holds in my case- but I am scared of staying on them too.....

best wishes to all those struggling with this tricky substance,

 

magga

 

 

 

Hi Magga,

So sorry you are struggling?  Can I ask what you are/were sick from? 

 

If you are in the US, I don't know why any pharmacist would have any influence over your taper, though I have seen other people say so.  In that case, I'd switch pharmacies ASAP.  I originally went to Sam's Club and they were kinda treating me like an addict for asking questions, trying to pick my script up before 30 days were up (my doctor's appointments are every 4 weeks).  I switched to a local place and they know my situation, they know my doctor and are nothing but kind. 

Hi Mom, Its hard to explain. I had a serious psychoneural breakdown which came on after struggling for months with some central pain/ fibromyalgia thing. Anxiety and burning were intolerable and  unfortunately I can't tolerate pain killers or just about any drugs- an Antibiotic set off a similar chain of events in 2012.

I'm in the UK. Ironically I have been campaigning to raise awareness of benzo withdrawal- being back on them pretty devastating- hence very small dose (much less than prescribed) but it doesn't do much, and I'm far too stressed to work (can cook and walk thank goodness).

Hopefully the drug counsellor will intervene on my behalf....

 

Very best wishes

 

magga

 

 

 

 

Candace, you are pretty functional with exception to driving?  Is it dizziness that keeps you from it?  I wasn't able to drive for a while when I was still on Klonopin but then it seemed to pass and I was able to again.  Are you in a hold now or just tapering ultra-slow?

 

 

Yes, I am pretty functional with exception to driving.  For me, the driving is extremely challenging because I'm having some visual-spatial issues- kind of like my depth perception feels off in the strangest way, and I have vertigo which is related to my vision. Sometimes I feel like I'm floating.  Also, I had a really bad car accident, (pre benzo in 2011), and I have PTSD from that.  I struggled with panic attacks while driving before I was taking Xanax for insomnia, and now during withdrawal, that phobia is ramped up.  My amygdala goes from 0-60 in a couple seconds, (no pun intended, haha).  Part of my panic response also includes my eyesight- I lose my peripheral vision, and my head starts to squeeze, I feel completely unbalanced and like I may pass out.  So, I'm not really driving much at all right now . I want to practice driving on my window days. I firmly believe in the "the neurons that fire together wire together" theory- that if I practice driving during times I'm feeling more stable, it will be easier to begin driving again when I'm more fully healed. 

 

Magga- I'm so sorry you're struggling and I hate that you're experiencing shaming at the pharmacy.  I've been there too, and it is so cruel.  Although here in the US the pharmacist has no control over the prescription except dispensing early.  My hope is that eventually the public will no longer stigmatize benzodiazepine withdrawal syndrome, but first, the medical community has to set that example.

 

For me, long holds have been very helpful.  Long meaning more than a month.  I agree that everyone is different.  And speaking of long holds, I am about to wrap one up.  We moved this month, and I just completed the dental work that I had planned to do.  To be honest, I'm dreading starting back up.  I'm really hoping that this long hold stabilized me enough so that tapering will not feel as awful as it did when I began the hold in August.  I am tapering ultra slow, about 5% per month.

 

 

Candace, please feel reassured you are going a a great pace (especially compared to me, at 1 percent per month).  I agree that we are healing as we go, I have read a lot and I am ok with this pace as long as the drug doesn’t cause additional illness.  I too began to feel ill prior to this drug,  which is why the alprazolam was prescribed.  Felt dizzy, exhausted, heart rate issue.  They later found I had no estrogen in my body.  I am in menopause (2 years).  I opted not to take estrogen as I don’t won’t to run the risk of cancer.  Especially being on this drug, don’t want to make a bad situation worse.  Also, each time I have been prescribed any type of steroid, I suffer depressed breathing.  I just want off, but want to be safe and functional doing it.  I am starting to realize that taking it slow has many advantages.  Many people suffer catastrophic symptoms after discontinued rapid tapers.  Hoping for the best for all here, thank you for the post, I needed the support.

Candace, please feel reassured you are going a a great pace (especially compared to me, at 1 percent per month).  I agree that we are healing as we go, I have read a lot and I am ok with this pace as long as the drug doesn’t cause additional illness.  I too began to feel ill prior to this drug,  which is why the alprazolam was prescribed.  Felt dizzy, exhausted, heart rate issue.  They later found I had no estrogen in my body.  I am in menopause (2 years).  I opted not to take estrogen as I don’t won’t to run the risk of cancer.  Especially being on this drug, don’t want to make a bad situation worse.  Also, each time I have been prescribed any type of steroid, I suffer depressed breathing.  I just want off, but want to be safe and functional doing it.  I am starting to realize that taking it slow has many advantages.  Many people suffer catastrophic symptoms after discontinued rapid tapers.  Hoping for the best for all here, thank you for the post, I needed the support.

 

Thank you seasalt.  I am also in menopause, and I often suspect that what I was experiencing in 2014 in terms of insomnia was actually the beginning of it.  I agree with you that being safe and as functional as possible is the key here in coming off of this medication.  As we all know or are learning- the end of the taper does not signify the end of the suffering for those of us with benzodiazepine withdrawal syndrome.  Many have said "this is not a race, it is a marathon", and I will add to that the thought that life is always happening.  We don't know when our last day will arrive.  We have to live, truly live, through any experience life sends our way.  This is life happening, right before our eyes.  Let us not squander it.  Let us take good care of ourselves, and love ourselves through this process.  There is no dead line we have to meet to live our way through this.  Each day is sacred, each day is a gift. We can give ourselves permission to truly live while we are tapering this medication.

Candice, that is a very beautiful reminder that each day matters...

I could not agree more Candace!  When the reality hits that the taper is going to take “years” vs months hits, it’s tough to take.  But trying to go faster and suffering so badly, just does not make sense.  As long as the amount of the drug is reduced and I can tolerate it, I am going to continue moving slowly and safely off this drug.

Hey all! 

 

I’m checking in to see how everyone is doing ☺️ 

 

I’m doing alright! A few rough days or nights here and there but overall not bad. I’ll take it!  I just realized that I cut about a quarter of a mg in 6 months and that’s pretty darn good considering I only have about 1.3 left to go. Turtling my way down...

 

 

I just found this group.  Too late it seems.  I took my last dose of ativan on Thanksgiving day and today is my eighth day benzo free.

 

It has taken me four years and ten months to taper off 1 mg of Ativan.  The last two years even miniscule cuts caused troublesome sx.  I have had to hold for 6 months or more to get things to calm down.  I live alone and needed to be functional, so being so dizzy it was difficult to walk across a room was just not sustainable.

 

I highly recommend long holds.  It gives your CNS a chance to calm down and do some healing.  Often, after a lengthy hold, I could resume cutting with less difficulty, at least for awhile, then I would do another long hold.

 

Low and slow and you will get there.  I have, and I thought I never would. Ginger

Congratulations Ginger!  Low and slow is the name of the game here too. My taper is going much like yours did- minuscule reductions at a slow pace with some long holds. I’m experiencing exactly what you described- a sense that my body is healing, restoring and catching up during long holds. And like you, I can’t lay in bed and suffer- I have kids to raise    How has it been since you took your last dose?

 

 

Congratulations Ginger!  Low and slow is the name of the game here too. My taper is going much like yours did- minuscule reductions at a slow pace with some long holds. I’m experiencing exactly what you described- a sense that my body is healing, restoring and catching up during long holds. And like you, I can’t lay in bed and suffer- I have kids to raise    How has it been since you took your last dose?

 

Candice,

I'm doing better than I ever thought I would.  I had originally planned to take my last dose on Dec. 31st.  Frankly, though, I just got tired of the whole process.  I wanted off and decided I would just do it.  I had been preparing for the last few months to be off at years end.

 

My first day off I felt fine.  Day 2-4 I just had my usual wd sx, headache, dizziness, fatigue, sinus pain and pressure and lots of burning and tingling in my feet, legs and sometimes arms.  Day 5 was much better.  Day 6 was awful but it transitioned to a very nice window by late afternoon.  Yesterday I felt good most of the day.  Not as good today but I'm keeping busy, prepping food for the next few days in case I get much worse.

 

It feels so good to be done.  My taper paraphernalia has been put away and my remaining pills discarded.

 

I honestly don't know how anyone does this while raising children.  I have the deepest respect for those who power through a taper with kids, jobs, etc.  Best of luck as you continue and I will check in so I can congratulate you when you finish.  Ginger

Hello x I thought I might join you all xx I’m on 1.42 v just down from 1.5 doing dlmt. I’m struggling. My sleep it my worst sx. I get 0-4 hrs a night. Last 2 nights 0-1.5. I’m probably still in acute from zopiclone (stopped that September 30) but sometimes I wonder if it’s the v that’s causing the sleep problems. Anyway my plan is 5% every 2-4 weeks depending on sxs. Xxx

Shayna,  I have the same sleep issues, it stinks.

Shayna and Salt- I'm sorry to hear your sleep is so challenging right now.  Everything is so much harder and intense when you can't sleep to restore.  I'm sure this is an over-used sentiment right now, but, this will pass.  I like to tell myself "this is passing". It's true- with every second, we are healing.

Nice to meet u Candace and salt x sorry ur struggling too salt x thanks for the well wishes Candace. I’m trying to keep reminding myself it will get better, it is awful being awake when it feels like the whole world is asleep. But from where I’ve been this is doable x I’m set to make another cut in maybe 4 days. It’s day 8 since last cut and so far I have had no uptick in sxs and have been feeling ok. Sleep is the same so I will take next step if all’s well in 4 days. I hope all in long haul are doing well today xx 

Shayna, based on your progress you are doing great!  As long as you are dosing down you are making progress.  Sleep will come eventually, it just makes you feel terrible the less you get.  Hugs to all...keep pressing on!!

Thanku salt! You are doing amazingly too! .33! I know ur hurting but that is such an achievement. Well done. Even tho u are still feeling rough, do u feel better than u did on higher doses salt?

I am feeling about the same to be honest, every cut brings different side effects.  I am going very slow but steady...hoping to walk off instead of going through PAWS.  I can’t help but feel like I am one of the 

“Unlucky” ones.

I feel like that too sometimes. My insomnia and heart Palps are pretty severe. Getting a lot of joint aches and headaches now. What are ur sxs salt? X

Candice, I am often pleased to read posts from you. You have such a great attitude and I think it’s a blessing to the rest of us when we see positivity.