Are there any long haulers here? I feel very alone, been on about 14 years...

[[bu...]]

I'm a long hauler and it's frustrating to have to sift through posts of short termers to find long haulers that I can relate to. I have to do this with the success stories as well as there are many who have been on benzos less than a year who write success stories with headlines such as "I did it and so can you". I understand they mean well but it's like comparing apples to oranges. I read about the "horror" they felt when they had to deal with terrible anxiety (which they could run off or distract themselves from, and they could still work), their insomnia (which wasn't that bad if melatonin, magnesium, a hot bath, etc... helped), etc.... very disheartening because it makes me feel even more hopeless since I'm tapering in tolerance with constant chemical anxiety, etc.....................

[[va...]]

I'm a long hauler and it's frustrating to have to sift through posts of short termers to find long haulers that I can relate to. I have to do this with the success stories as well as there are many who have been on benzos less than a year who write success stories with headlines such as "I did it and so can you". I understand they mean well but it's like comparing apples to oranges. I read about the "horror" they felt when they had to deal with terrible anxiety (which they could run off or distract themselves from, and they could still work), their insomnia (which wasn't that bad if melatonin, magnesium, a hot bath, etc... helped), etc.... very disheartening because it makes me feel even more hopeless since I'm tapering in tolerance with constant chemical anxiety, etc.....................

 

Butterfly thank you for writing this! I've felt like that so many times when reading some posts but I didn't dare word it.

[[Un...]]

I'm a long hauler and it's frustrating to have to sift through posts of short termers to find long haulers that I can relate to. I have to do this with the success stories as well as there are many who have been on benzos less than a year who write success stories with headlines such as "I did it and so can you". I understand they mean well but it's like comparing apples to oranges. I read about the "horror" they felt when they had to deal with terrible anxiety (which they could run off or distract themselves from, and they could still work), their insomnia (which wasn't that bad if melatonin, magnesium, a hot bath, etc... helped), etc.... very disheartening because it makes me feel even more hopeless since I'm tapering in tolerance with constant chemical anxiety, etc.....................

 

Butterfly thank you for writing this! I've felt like that so many times when reading some posts but I didn't dare word it.

 

I second (or third?) this!  Right there with you all. 

[[ja...]]

My god I'm glad for this post.  I speed scan through many posts looking for others who have decades of use. 

 

I want to hear how you all are doing during tapering and after.    When a long time user finds a solution I get really excited.....  I'm so close to the end now.... I've been cutting 2 benzos for over 4 years.   

[[Fr...]]

Deadman walking you became bedridden due to an updose?

 

Yes I did. I can't even begin to understand what happened or why it happened...I was in a tough spot and trying to get some relief but it had the complete opposite effect on me. My POTS is worse the fatigue and brain fog is worse I guess maybe benzos are doing more harm than good at this point.

 

This happened to me on a 14 day dose correct in my micro taper. The increase was stimulating and started a adrenaline surges every hour and a half through out the night and left me bedridden with exhaustion I am so weak and with pots can barely make it to the bathroom. I can't understand what is happening and am unsure if holding will make everything worse at this point or if coming down slow is the way to go.

[[Lo...]]

Right there with you all! 23 years so far (including tapering). I honestly believe that long term use like ours has its own set of unique challenges!  My entire adult life has included this drug.

 

This has been the fight of a lifetime. So much lost but still hopeful for a much better future!

 

Fondly,

Lori

[[De...]]

I’ve been on and off, then for the most part of 14 years I stopped for a year and then continued for three years stopped for another year every time I have had to reinstate because it gets so bad, this last time I was all the way down to 0.75mg and now I’m back at 2.5mg a day. I get extremely discouraged because I was feeling great and then all of a sudden I developed inappropriate sinus tachycardia as well as POTS syndrome, my heart rate was going over 220BPM. I didn’t taper fast at all and it all came out of no where... I’d like to get back down to at least 1MG. I’m just so scared to even try at this point... I’m on propranalol and corlanor for my heart... it helps but I still have adrenaline surges that scare the crap out of me... I really need to know I’m not the only one who’s been on for years and years ... I don’t even have a clue how I would restart this taper or if I’m ready to... I just need a little guidance

 

 

 

Our stories are extremely similar even down to the adrenaline surges, POTS and innapropiate sinus tachycardia! I'm on my 3rd attempt to get off now and struggling more than ever.

[[Fr...]]

Right there with you all! 23 years so far (including tapering). I honestly believe that long term use like ours has its own set of unique challenges!  My entire adult life has included this drug.

 

This has been the fight of a lifetime. So much lost but still hopeful for a much better future!

 

Fondly,

Lori

 

Hi Lorie- Did your hold for a year help at all?

[[Lo...]]

FruityPop,

 

Yes, and no.  Yes because I had been reducing pretty quickly and worse, kept reducing even when I was essentially bed bound and having horrible symptoms. I was rushing to finish instead of allowing my body to adjust to the cuts.  It was stupid of me!  Additionally I started dosing 3 times per day instead of 4 and it really messed me up!  It took me a month to realize this but by then my CNS seemed fried! 

 

It took several months to finally feel quasi better (probably about 2-3) and I could have resumed tapering but by that point I just needed a break.  My son was coming home from college for Christmas and I had pretty much lost the Christmas prior.  My dad had just recovered from a Stroke, My mom had recovered from serious heart surgery and I just wanted to enjoy the holidays with my family... and I did!   

 

I probably should have picked my taper back up that spring but again, I was exhausted!  I just rode out the 1 milligram and hold until it genuinely started to catch up with me.  It's as if a year on the 1 milligram began to cause it's own tolerance issues.  If I had to do it all over again, I would have only held for about 3 months and resumed.  If I had, I'd be done this by now. 

 

I hope this helps! 

 

Fondly,

Lori

[[Fr...]]

FruityPop,

 

Yes, and no.  Yes because I had been reducing pretty quickly and worse, kept reducing even when I was essentially bed bound and having horrible symptoms. I was rushing to finish instead of allowing my body to adjust to the cuts.  It was stupid of me!  Additionally I started dosing 3 times per day instead of 4 and it really messed me up!  It took me a month to realize this but by then my CNS seemed fried! 

 

It took several months to finally feel quasi better (probably about 2-3) and I could have resumed tapering but by that point I just needed a break.  My son was coming home from college for Christmas and I had pretty much lost the Christmas prior.  My dad had just recovered from a Stroke, My mom had recovered from serious heart surgery and I just wanted to enjoy the holidays with my family... and I did!   

 

I probably should have picked my taper back up that spring but again, I was exhausted!  I just rode out the 1 milligram and hold until it genuinely started to catch up with me.  It's as if a year on the 1 milligram began to cause it's own tolerance issues.  If I had to do it all over again, I would have only held for about 3 months and resumed.  If I had, I'd be done this by now. 

 

I hope this helps! 

 

Fondly,

Lori

 

Ok that is really good info. I am at just under 2mg and was losing function in bed until evening. I did a 14 day dose correct on my micro taper and it has sent me to a crash where I can barely make it to the bathroom. I have not tapered fast but do believe as I got into the lower numbers I just couldn't handle over 10% I also tapered my AD at th same time but have been holding on 1.3mg of that for a while because jumping was bad so I think just to much for me in all. I have heard others say on the long hold group 3 months no change is helpful. Just with the up dose stimulating me it's hard to know what to do. I was very sick in tolerance for a year and a half and never stabilized holding. Slowly tapering made the difference but I do think this is a different situation where the taper has caught up to me. I started tapering about 3% a week ago and I am not sure but think I am worse in the fatigue department but some of the anxiety and fear burning has disappted with starting to cut. I held only three weeks and even in those three weeks I made a small cut once a week. A lot of indecision.

[[Fr...]]

FruityPop,

 

Yes, and no.  Yes because I had been reducing pretty quickly and worse, kept reducing even when I was essentially bed bound and having horrible symptoms. I was rushing to finish instead of allowing my body to adjust to the cuts.  It was stupid of me!  Additionally I started dosing 3 times per day instead of 4 and it really messed me up!  It took me a month to realize this but by then my CNS seemed fried! 

 

It took several months to finally feel quasi better (probably about 2-3) and I could have resumed tapering but by that point I just needed a break.  My son was coming home from college for Christmas and I had pretty much lost the Christmas prior.  My dad had just recovered from a Stroke, My mom had recovered from serious heart surgery and I just wanted to enjoy the holidays with my family... and I did!   

 

I probably should have picked my taper back up that spring but again, I was exhausted!  I just rode out the 1 milligram and hold until it genuinely started to catch up with me.  It's as if a year on the 1 milligram began to cause it's own tolerance issues.  If I had to do it all over again, I would have only held for about 3 months and resumed.  If I had, I'd be done this by now. 

 

I hope this helps! 

 

Fondly,

Lori

 

Oh was it 1mg Xanax or Valium ? I wonder with my dose so low if the hold will help. It's more about letting the cuts catch up and the nervous system calm down correct? At just under 2mg v equivalent now.

[[Lo...]]

I never crossed over to valium.  I've done a direct taper from Xanax the whole time. 

 

As far as the hold, you'll only know when and if you try.  Keep us posted on what you decide.  Good luck!

 

Lori

[[Fr...]]

I never crossed over to valium.  I've done a direct taper from Xanax the whole time. 

 

As far as the hold, you'll only know when and if you try.  Keep us posted on what you decide.  Good luck!

 

Lori

 

Thank you Lori

[[Ci...]]

Yes - was on increasing doses of Xanax for approximately 10 years and then was switched to Clonazepam, which I have been on for about five years or more. Tapering has been challenging, but okay, although I have had some crisis events that were horribly uncomfortable. I got good advice here to slow down and listen to my body. I held at 0.875 of Clonazepam for about a month to ensure functionality for some big things I had to do. That proved exceptionally helpful and I am now restarting my taper. I have felt GREAT this last month and much more like myself. My memory issues are still there but are getting so much better. I have much less fog, although I am exhausted and sleep way too much. I don’t know if that is related to depression or the taper or both. I can’t seem to get motivated to do some very, very important tasks. This next part of the journey makes me pretty nervous. But I am trying hard to be positive.

[[To...]]

Yes, I am a long hauler of almost 38 years.  I started on a low dose prescribed by my mental health doctors and gradually went up to 4 mg through the years.  I became tolerant about 2 months ago was updosed to 6mg and decided it was time to come off benzos altogether.  I am on my second week and have taken 1mg away.  I will cut and dry taper from .25 to .50 every 2 to 3 weeks depending on how I feel.  I have had anxiety all my life but have been able to function.  I had horrible withdrawals when I became tolerant to the drug but I have learned to meditate, Pray and have Faith, listen to binary beats (they really work), and I am doing the D.A.R.E. program.  I make myself get out of bed every morning and make the bed, do some housework and exercise and continue to run errands, go shopping and go out for fun when I a able as I know it is going to take over a year for me to be free of this drug.  Just stay positive as that is all we can do.  I have meet some wonderful people on this board who have helped me ever so much.