Author Topic: Long Haulers  (Read 475 times)

[Buddie]

Long Haulers
« on: September 25, 2020, 06:55:34 pm »
Hi all!

This support group is for those of us who have needed to taper at an extremely slow rate, at times below the ď10% per monthĒ 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 couldnít 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. Iím down to 1.4 mg of Diazepam (from 11 mg), and Iím currently on a long hold while we complete a move and I have some dental work done.

Iím a [...], 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 (Iím 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 [...] 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 itís taking (or will take) years to come off of your medication.

ďYour speed does not matter, forward is forward.Ē
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #1 on: October 19, 2020, 10:15:17 am »
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 ďIím in it for the long haul tooĒ!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #2 on: October 19, 2020, 01:16:55 pm »
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 ďIím in it for the long haul tooĒ!

I completely get everything youíre 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.
Thatís really awesome that your interdose withdrawal quit on its own.

Iím so glad itís 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. Iíve also embraced the opportunity to ďthrow out the calendarĒ 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 ďnothingĒ. Healing is happening every step of the way.  :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #3 on: October 19, 2020, 02:34:28 pm »
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.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #4 on: October 19, 2020, 02:57:37 pm »
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,

[...]


Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #5 on: October 19, 2020, 03:16:01 pm »
Hi [...],
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. 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #6 on: October 19, 2020, 04:11:53 pm »
Hi [...], 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

[...]

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #7 on: October 19, 2020, 04:27:22 pm »


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. 

[...]- 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.

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #8 on: October 19, 2020, 07:27:39 pm »
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 doesnít 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 donít wonít to run the risk of cancer.  Especially being on this drug, donít 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.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Long Haulers
« Reply #9 on: October 20, 2020, 12:19:21 pm »
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 doesnít 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 donít wonít to run the risk of cancer.  Especially being on this drug, donít 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. :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.