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Mutiple Tapers/long haulers/high dosages


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I am starting this support group for those of us who have been on this merry go round more than once, with more than 1 taper. Also for folks who have been or are at a high dose. Also, if you have been on your med for a long time.

 

I know there are plenty of us, so hopefully we can get a support group going.

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I took .25 mg twice a day for about 4 years and it worked well. I was then hospitalized and CT off Xanax and tolerated it pretty well. Fast forward to 2020 and I told my new Dr. I need Xanax and I told him .25 mg twice a day but he prescribed me 2 mg twice a day! I thought I hit the lottery. 8 months later I was at the ceiling, hit tolerance and was in paradox on my doses. Now I am doing a liquid taper. Out of sheer fear of paradox combined with fear of WD, I ended up dropping to 2 mg immediately. I am now (5 weeks later) down to 1.4 mg a day. I have horrible insomnia (last night was slightly better) and mild to moderate anxiety all the time. I also have some shaking at times. Other than that, no more paradox and no other major symptoms. I don't need anymore!

 

I have PTSD and a history of insomnia, panic and anxiety. I will have to learn to navigate these things without the aid of Xanax which I am tolerant to anyway. I am hoping my brain can heal while I taper so that I can ease off this med in a few months and be OK. Wishful thinking perhaps but that is my goal. I am hypersensitive to life's ups and downs.

 

I look forward to hearing from other high dose/years long benzo users to exchange support.

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baddove,

 

What a great idea to start this. Hopefully it will have more who join. I, as you, am sure that there are many others out there. I have read many of your posts and can relate to your struggles of trying to get off of these drugs.

My ordeal started back in 1997 and hence the Klonopin given in 1998.

I had a surgery that was not needed and then the Dr. didn't know how to manage hormones afterward. Not enough, and then a patch that I had a severe adverse reaction to. That led to the Klonopin and the rest has been a wild ride up to this point.

I will go into further details next post as it is late.

I wanted to say that I am on a high dose. Last year I was on half of this. Many stressors led to the up dose.

I have been on this drug 23 years, minus 4 months sitting in C/T, until I was reinstated. I did great for 6 years stabilizing and tapering until the stressors came. I am 67 now and wonder if I will ever get off.

 

Thanks again for doing this.

 

Dana

,

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I'm definitely a long hauler as I have been methodically reducing for 3+ years now. Additionally I've been on this for 23 years (including the tapering years).  High dose?  Got that too!  Topped out at 6 milligrams of Xanax.  I do fit into "multiple tapers".  I never really thought about this because I was put on Xanax several months prior to finding out that I was pregnant with my son and stopped cold turkey the day I found out that I was pregnant with zero issues at all.  I have to wonder now if that's part of the reason I'm struggling so much.  Everyone talks about how multiple tapers can be problematic.  I'll never know if it was that or if it's simply because I've been on it for so long.

 

Nevertheless, I'm hopefully about to cross the finish line in a few months.  Fingers crossed!! 

 

Lori

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Hi Lori,

 

I am so glad that you are near the finish line!

You have been on the drug as long as I have. It is amazing that you quit C/T when you were pregnant with no problem. I am glad that you did.

After being put on the K due to the patch reaction, I tried for years to get off. Early on, I had no computer and all the Dr knew to do was cut by .25mg/week. It was horrific and needless to say I had to up dose. After a 4 years of trying, I thought a detox center would know how to get people off. It was horrific. I was jerked off and given a week of Phenobarb. I was treated like an animal. I was not an addict like the rest who were on heroin, cocaine, etc. I was so sick and thought I would die.

I checked out and went home where I kept getting worse. My ex husband had a demanding job and traveled. My son was in college, so my Mom came and got me. She took care of me for 4 months.

I finally got into see a benzo wise Dr. and he immediately reinstated me. He was angry and appalled as to why they put me on and how the detox got me off. He stated that it takes years to get off.

I am grateful that I made it through, as I could not even drive.

Fast forward and after many attempts and getting down to 1.25mg back in 2006, I was doing great until my Mom started with major health issues. She lived 3 hours away. Also a setback with being on Progesterone back in 2013. Had to up dose.

I was doing great again last year and was at 1.75 mg, when my Mom had to have major surgery at 92. Then a medication induced antibiotic setback. Had to up dose again.

I still have hope that I will one day at least get down lower. I am very driven and can't give up hope.

 

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I'm on here primarily because of the high dose I was on (4 mg Xanax) but I have also, in the past been on .25 mg twice a day and was CT'd of that then reinstated by another Dr. a couple years later, then that Dr. cut me off. My brain has been through a little bit with regards to Xanax.

I started my current dose a year ago and hit tolerance 6 weeks ago and started tapering. Insomnia and anxiety are my biggest symptoms. I am going to hold my current dose for a couple more weeks due to anxiety.

 

I hope you all are having the best Friday you can have,

 

HM

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Heart-

 

before you cut from 4 to 2 mgs, how much xanax were you taking per dose and how often. I just made a big cut, I suspect my body wont tolerate it, but I am sick of paradoxes. Thanks!

 

-That went badly.

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Hi BD,

 

  When I was on 4 mg of Xanax, I used a 2 mg tab during the day by biting (I know...) off 1/3rd at 11:30 am, then at 3:30pm and then I would take the last bit at 6:30 pm, then at 9pm (or so) I took the other 2 mg tab all at once to sleep. About 6.5 weeks ago, it quit working for me. I had bad interdose WD and even a 2mg tab wouldn't put me to sleep. It caused my heart to pound and for me to get breathless. I ordinarily wouldn't cut 50% right out of the gate but I was actually afraid to take it. I cut a 2 mg pill in 8th's and took .25 mg (or the best I could do to cut it accurately) every 3 hours. After having crumbs and bits everywhere and feeling like my pieces were not uniform, I went to a liquid taper where I dissolved a 2 mg tab in 200 ml of water. At dose time, I shake my water bottle to disperse the Xanax and then pour some in a measuring cup. I use a syringe to draw up my dose and then pour the remainder back in the water bottle. No wasting. I stock pile my pills and don't throw out liquid just in case I get cut off my Rx. I am planning to jump when I am down to 1 ml, one time a day which is .01 mg.

 

Hope that helps. I am holding my current dose of 16.5 ml every 3 hrs as I have some stressful events coming up. On July 2nd, I will cut again. I have noticed that the lower in dose I get, the more sensitive I get. That's a bummer because I want to be off this stuff. I am going a little bit fast because of fear of losing my Rx.

 

What is your current dose? and what are you cutting to?

 

HM

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BD,

 

I can definitely relate to getting nothing out of Xanax besides WORSE interdose WD or paradox. I am sorry to hear you're stuck in that situation. You have to tread lightly, obviously. I still remember when Xanax use to work for me and would take away my anxiety or put me to sleep. Not anymore. I just want off this crap so bad I can't even express it but it owns me at the moment. I have to take my ml every few hours to avoid (worse) symptoms AND I have to keep cutting until I get to zero in, hopefully, a few months time. We'll see how it goes. I hate clock watching and taking doses that don't make me feel good but it is what it is.

 

Hang in there. It will be a long road for you but you can do it. Sounds like you are going to have to go very slow for a long time. We'll keep you company. I remember just a few years ago, my Rx was .25 mg twice a day and it worked! Took my anxiety away and put me to sleep. I somehow ended up on 4 mg and in paradox and interdose WD. I feel your pain. I am holding at 1.15 mg a day (16.5 ml every 3 hours until July 2nd when I drop to alternating 15 ml and 16 ml (.15 and .16 mg) every 3 hours.

 

  HM

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Heart

 

I am amazed that you were able to taper with the paradox/no benefit situation.

 

I think your amazing.

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I really appreciate all the posters. Do you folks think that multiple tapers make the process harder? Any other thoughts on the uniqueness of our situation?
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I have bipolar and was hospitalized for it a couple times and CT off Xanax in the hospital. I can't say if it is making my interdose WD worse or not? From everything I have read, it probably is but I can't say for sure. I probably have kindling but I don't know.

 

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Looking back over my taper and worse, having actually 'forgotten' that I took if for several months prior to my pregnancy and stopped cold turkey without ANY issues whatsoever, I truly have to wonder if it's what made this taper so much harder for me.  I know far too many people who even after several years of use, at a significant dose, were able to discontinue with relatively mild symptoms. 

 

I'm actually blown away that my taper has been this difficult.  I didn't see it coming.  When I joined BB years ago and read the many horrific stories, I crossed it off to many having been poly-drugged.  I honestly was not prepared for a painfully long and symptom riddled journey. 

 

My length of use and high dose probably contributed immensely to the problems I've had but you really have to wonder if the second or third time is more problematic.

 

Additionally, I think that once you become tolerant to the benzo, all hell breaks loose.  I know that during my last year of grad school and internship, I started to wonder what was wrong with me.  I'd be in the middle of a session with a client and could feel the room starting to spin, my face would drain of color, and I was preoccupied with "does my client see that I'm not 'right" right now?"  It really bothered me.  I would cross it off to having not eaten in 4 hours, etc.  Only to find as the next year or so went on, that it started happening more frequently.. even if I was sitting at home and relaxed.  This is what prompted to me start looking into Xanax  At that point, I had been taking it for close to 15 years, as prescribed, as a compliant patient, and never thought twice about it.  Well, as we all know, after that research... the rest is history!  In a nutshell, I think that the minute you reach tolerance to a drug, and start experiencing interdose withdrawal like I did, every dose seems to be paradoxical in the sense that it no longer alleviates symptoms.  And then you can only continue to updose so much before nothing works anymore.  At least that was my experience.  I did not feel ANY better at 6 milligrams than I did at 4.  That's when I knew that it I absolutely had to come off of them.

 

Of course, what I found out during those months of research back @  2015-2016 were devastating!  The internet was non-existent when I started Xanax and I had never even heard of the word Benzodiazepine.  Never!  I thought I was taking some sort of SSRI (not kidding).  I was THAT naïve!  My doctor who had initially prescribed them blew off my questions with a swipe of the hand telling me that these were perfectly safe to use long term and non addictive!  I KID YOU NOT!  Those were his words in 1998... because I asked! 

 

I honestly believe that length of use, duration, and of course multiple tapers or C/T's all play a major role in the degree of difficulty getting off.  However, I think it's worth it!  A year ago, I never thought I'd get this far.  I was ready to give up!  But here I am... only a few months left. 

 

You got this, BD!  I swear you can do it!!!

 

Love,

Lori

 

 

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Thank you for summarizing your story, again, Lori. Knowing you can do it, makes me think I can do it too. I hope BD feels the same way. Us high dose Xanax users have our work cut out for us.

 

Have a great day :)

 

HM

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Lori,

 

You have always been so helpful, and are a Bastian of solid advice. Because of you, I started to cut. (You wrote me a tough love post, which I have saved in my progress log (it is down the page here if you want to look at it  http://www.benzobuddies.org/forum/index.php?topic=243067.40)

 

This line that you wrote is where I find myself:

In a nutshell, I think that the minute you reach tolerance to a drug, and start experiencing interdose withdrawal like I did, every dose seems to be paradoxical in the sense that it no longer alleviates symptoms.  And then you can only continue to updose so much before nothing works anymore. 

 

Thinking about all that everyone has written, and my own experience. This time, it's the paradoxes (I had them before) that are causing me so much pain. A month ago, I was still dosing closer to 9 Mgs. I have to keep notes to see if I'm moving or stagnant. I am moving.  Looks like I need to hold here, I really hope this calms down.

 

Loves to all, the battle rages on :smitten:

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Lori,

 

You have always been so helpful, and are a Bastian of solid advice. Because of you, I started to cut.   I'm speechless... because right now I don't feel of much use, let alone help, to anyone!  You just made my day.  (You wrote me a tough love post, which I have saved in my progress log (it is down the page here if you want to look at it  http://www.benzobuddies.org/forum/index.php?topic=243067.40)

 

This line that you wrote is where I find myself:

In a nutshell, I think that the minute you reach tolerance to a drug, and start experiencing interdose withdrawal like I did, every dose seems to be paradoxical in the sense that it no longer alleviates symptoms.  And then you can only continue to updose so much before nothing works anymore. 

 

Thinking about all that everyone has written, and my own experience. May try more experiments. I am stuck at 8.25/.5 just like I was stuck around 9.5. It has taken me 2 months I think to get down here.  This time, it's the paradoxes (I had them before) that are causing me so much pain. A month ago, I was still dosing closer to 9 Mgs. I have to keep notes to see if I'm moving or stagnant. I am definately moving.

  And you are!  The pace does NOT matter!

Loves to all, the battle rages on :smitten:

 

BD:  If this helps at all.... even a smidge... I cannot begin to tell you the difference I felt when I reached the halfway mark.  I swear to all that is holy that I was sooooo much better.  All that horrible anxiety just vanished!  I didn't know what to make of it!  I kept waiting for it to come back.  I didn't see how it couldn't since I still had so far to go.  But guess what?  It really did!  Sure, I got slammed with physical stuff (all the muscle and GI issues) that I never saw coming, but not everyone gets this! 

 

If I can offer you any ray of hope at all it's that so many of my former buddies that are now off of this (SeakingPeace1, Kristen, etc.) all went though this.  We ALL started to feel much better at the halfway mark.  It's almost like your body and brain give you a reprieve in order to tackle the second half.  So please, please, please, hang in there.  Keep going. Plow through the really rough patches because better days are on the horizon... even before your taper is through.  Things will change.  Sometimes it's subtle.  Other times you'll wake and wonder "When's xyz going to rear its ugly head" .. and it just doesn't!  I had some symptoms that were so bad... the internal vibrations come to mind right now - but I had to dig deep, that I honestly forgot about until I read over my notes.  I'm very serious when I say that you'll find yourself forgetting them. 

 

Please trust that you'll have to wrap your mind tightly around the fact that you're going to have some crappy months... but they will stop!  And if you're like many of us, once you hit @ that 3.5 milligram (or whatever your midpoint may be) dose, you may also feel the shift.  It's a reprieve!  If you stick with it, you'll be fine.  You have so many tools in your arsenal!  I believe in you!  I truly do!!!  :smitten:

 

Sending love and strength!

 

Love,

Lori

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Thinking about all that everyone has written, and my own experience.

 

A site I find very helpful mostly for information is this: http://www.beatingbenzos.com/365527979

 

It is the only site I have found that lists paradoxing as a symptom: http://www.beatingbenzos.com/365528008

 

Anyway, it is based in the UK, but has a lot of information.

 

I wish I could just cut to the halfway point now, darn it. I am going to have to hold here and hope the paradoxes settle down  for a bit. And yes, it will be crappy.

 

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Thanks for the link, BD. I'll have to check it out. I'm sorry you feel stuck at 9 mg's, but I am glad your symptoms aren't worse. Maybe after you have been stable for a while, You can start to taper again. Do you feel like your Rx is safe? Will you have access to enough Xanax to be able to taper?

 

Hoping you're having a good day and relatively stable on your dose,

 

HM

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Heart, I was stuck at 9 (often 9.5 some days  I hit the wall) starting last April and through the Winter.

 

I pulled up my benzo belly panties and started cutting this Spring, I am now at  8.5/8.75. (Just to clarify) I feel stuck here because of the paradoxes, but I havn't been at this dose long. Will have to hold and see if those paradoxes calm down. If not, will cut anyway in about 3 weeks.

 

Finding out that my situation of many paradoxes is not unique has been helpful. I'm sorry some of you also had this, but I don't feel so alone in this horror.

 

And I am not doing well. The ongoing paradoxes have shut down my activities (huge exercise enthusiast) I am just getting through the days. Every few days I get fed up and go do something, even if it's just Yoga.

 

Ok, it's time for someone else to take a turn.

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BD,

 

My bad. Thank you for clarifying. Well, I am sorry you aren't doing well. I don't get any exercise because of the insomnia and being tired. We're here for you as you cut. Sounds like you're cutting no matter what in about 3 weeks. How big of a cut are you making? I am cutting July 2nd to 1.085 mg from 1.15 mg. It seems so slow but that's how it goes.

 

You're not alone with the paradox doses. My doses don't 'attack' anymore but I get nothing out of them. I feel the same with or without but if I don't take it, I will get launched into severe WD.

 

HM

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I have been cutting 1 dose of .16 milligrams (half of a .25) at a time. I know, slowwwwww. Absolutely the right thing to do (slow cut) when it's very difficult, or near the end. Not a race. A journey towards healing that will move at the rate your brain allows.

 

The next .16 cut may come in a week or 3 weeks, it depends on how my body reacts.

 

Apart from paradoxing, I see the most distress over lack of sleep and anxiety as very common when it gets rough, and at the end. Your not alone.

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BD,

 

  1/2 of a .25 mg tab will be a lot more as we get down to .25 mg. Good for you for hanging in there and plunging ahead. I hope your body reacts well to your cuts and you begin to feel BETTER as you get lower. I hope that for me too. I want to believe my brain is healing as I cut and not just after I jump. I guess stabilizing between cuts is a form of healing.

 

  HM

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