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Long-Term Users group - w/d and recovery after longterm use


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Hi,

 

I didn't see a group for people on benzos for 15, 20, 25, 30 years or more, so thought I'd start this.  I would love to discuss issues related to being on for such a long time - either in withdrawing and how longterm use affects the withdrawal process, what has and is being said in news/research about the potential effects of longterm benzo use and what we have experienced (my worsening memory issues is what prompted me to get off them), and how to go forward with confidence using other methods to deal with what we were taking the benzo for - anxiety/panic, sleeping issues, other, after relying on them for so long.  I myself have been on benzo for 29 years - first 20 on Xanax, last 10 on Klonopin.  Never reached tolerance, kept same dose throughout.  But when extra anxiety, or in situations (at work especially) known to prompt panic attacks, would just take a little more, and it would help.  But now 53, my memory has taken a jump for the worse.  I want my mind as good as can be at this point.  So, despite psych telling me "you should just plan to stay on these for the rest of your life, no big deal" (!), well, change in direction now.  I bet a lot of others stayed on for a long time after receiving that same advice.  So, will see where this goes, hoping this takes off!

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Mybra,

 

I just saw this and am thrilled.  I feel really lonely at times because I haven't found a niche for me.  I used huge amounts over a long time - often 10X the amount of Xanax that the majority of our members report using - and I tried to start a "Combatting Huge Abuse Club" and although I've gotten readers, no one has found it appropriate to respond.  I hope I can tell you my story and maybe we can bring you message some attention.  I think it's very needed.

 

I don't have time to respond in details - but here's my story and the pitch I made on my thread.  I'm in - let's try to find others:

 

****

 

Am I the only one?

 

I love all of the support and thank you everyone for the guidance.  However, I often feel isolated because I can't find stories like mine.  I know that benzo withdrawal can be hard for anyone.  Every success is a huge victory for all of us. 

 

But when I talk about my abuse of Xanax, people often think I've hit a typo when I say that after 14 years I was a hard-core addict taking up to 30 (thirty) mg. of Xanax a day.  One of the badges I'll wear for the rest of my life is that I have 15% necrosis (tissue death) in my left kidney.  How did I wake up some days?  Ritalin of course.  What did I do for pain?  I needed lots of dental work and I'd see my dentist for a root canal to get 10 day scripts of narcotics to east the WD when I was out of benzos.  I still have dreams and nightmares about other times in my life with absolute clarity and remember specific things about people and things I haven't thought about in 30 years and could have never remembered.  It's like my brain is re-living my entire pre-benzo life.

 

My success is that I was able to taper down to 6 mg. a day myself but when I felt very ill I went into inpatient without a seizure.  When I first went into inpatient I was almost transferred to the ICU because my potassium and sodium levels were so low.  I have been out of inpatient for a year now, and am still on a slow taper of Klonopin.  I am struggling big time with compliance with my taper.  It's a daily fight for me.   

 

Am I the only one?  I feel; lonely at times.  I'm hoping to find others coming from similar situations.  I am thankful I'm alive, but please tell me I'm not the only one! I could use some company . . .

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HI Mybra

I've been on diazepam for 42 years.  So glad to have found this thread.

It's so hard when you're a long time user. I've never abused the benzos,  I've taken the odd extra one

when I've had a panic attack but that's all.

It's such a lonely road to travel and it's hard to get my head around the ways to cut down.

Would love to hear from others on long term and hear how everyone else is tapering.

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Hi Paul :),

 

Wow.  So you were a hardcore abuser with the benzo.  Well I'm glad you wrote.  I was kind of bummed no one replied to this, was going to bump it to try again.  So I am no expert on benzos, haven't been around BB long.  I have not read all there is to read on it.  But having said that I believe 2 usage profiles make it harder to get off benzos - longterm use and high amount use.  You have a combo of both, one (high amount) really extreme.  Were you a drug abuser in that you wanted to overindulge (it sounds like that)?  Or did you feel you just weren't getting the help u needed for a condition benzo usually prescribed for - anxiety, sleep, etc?  If it was a drug abuse thing where you wanted to get high all the time, I would think maybe Narcotics Anonymous could give u support, if not BB?  I am sure there are drug abusers around here too.  I haven't looked for groups in BB for the drug abuse side per se, as for me I never wanted to get high from it, just wanted relief from anxiety.  Anyway, as I am at risk for hard w/d and longterm use effects due to longevity so are you.  That's what I was going for with this support group.  You also have the very high amount, I feel like that DESERVES its own support group, and good you tried to start it.  For those issues, maybe if you try again you can get some takers.  I feel like theres room for both extreme longterm use support group, AND extreme high amount support group. 

 

Good for you for continuing to stay with it, for getting back on track.  I am so terrified of how this is going to go.  I am so terrified of the anxiety beast for one thing, dealing with that without benzos.  I know of lots of ways (I have researched) of dealing with it without benzos, but still real scary, yet to be seen if it will work.  I'm still taking an amount of Klonopin where the worst is totally yet to come I am sure.  I am about to do another cut, I feel stabilized now from the last one, so about to cut 1/8 of a pill from my night dose.  I feel I have to go so slow due to longtime use it will take me forever.  I imagine you have thought that too.  Again , glad u wrote :) .

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HI Mybra

I've been on diazepam for 42 years.  So glad to have found this thread.

It's so hard when you're a long time user. I've never abused the benzos,  I've taken the odd extra one

when I've had a panic attack but that's all.

It's such a lonely road to travel and it's hard to get my head around the ways to cut down.

Would love to hear from others on long term and hear how everyone else is tapering.

 

Hi wanna! 

 

So glad to hear from you!!  Yes, its really fricken intimidating when you've been on it for so long.  I just wonder - will my brain be able to work without them at this point?  Will it take so long to start working (if it even can) that I will suffer for years!  Sorry to be a downer, these are the worst thoughts.  I never upped my dose all the years I took the benzo, didn't reach tolerance I guess, and always wanted to take the smallest effective amount.  So that's the good news for me.  I am not sure of the conversion of Klonopin to Diazepam.  Were you also taking a low dose?  I would also only take a small amount more just ocassionally when things got really stressful, then I would go back down.  Benzos ARE effective for anxiety, its true.  But they numb you down overall, to life.  I want to find another way at this point, tired of being numbed overall.  I had harsh family things to numb out, but think (!), hope ready to deal with them without med - I am sure lots will come up to be dealt with.  So much got numbed down for 30 years.  Now to start dealing without any numbness.  Scary.  So glad you wrote, please read my reply to Paul that I just posted above just as you posted your reply! :)

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Somehow I can't reply to mybra's message but hope this will get to both of you.  I fell into the trap of being both emotionally and physically addicted.  Common - but I started to think I couldn't do anything in life without my Xanax.  I am worried now that I won't be able to function without benzos; which is really scary.  I'm never had short term panic attacks, but getting back into public without my meds sort of makes me feel like I might . . .

 

Just part of the process I guess.  How goes it for you?

 

Paul

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Hi, all  :thumbsup: I had 30+ year's of Benzos and got poly drudged because of lots of misdiagnoses, when Hell first started I was put on Ativan by misdiagnosis ::) and was on Ativan 2mg dose 30mg= a day.

 

Doctors orders not abusing them. Then pulled Off CT, Ativan 2mg= 20MG VALIUM :D, then many other benzos,Z drugs, Opiate painkillers, AD's, SSR'is CT off Temazepam and other psych drugs were they kept stopping and swopping.

 

Took myself off painkillers and lots of other different families of  drugs some CT others tapered. Been on Diazepam 18 TO 20 year's unknown to me I had gone in to tolerance WD, was on Diazepam 20mg, got CT' off 10mg so had CT on top of tolerance withdrawal which I had for over 8 year's.

 

Took a few year's to get down to 6mg Diazepam last October then dropped to 5mg 18/12/2014 until 18/ 2/2015 dropped to 4-1/2 mg March 2015. After a bit tried two days at 4mg went back to 4-1/2 for a few days and  16/3/2015 back to 4mg.

 

Got so many  severe SXS its unreal and many I had for year's and now while tapering their getting worse plus collecting a few others on the way.

 

Nova xxx :smitten: :smitten: :smitten:

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You're doing in incredibly well.  You've had a very wild ride.  I also love your comment about the medical profession. 

 

I just posted this question in another forum, and I hope this isn't the same forum.  I've read studies saying that withdrawal from Xanax can be far more difficult than withdrawal form heroin.  We ignore the risk because the docs and drug companies give them to us.  But if Pfizer and your doctor told you to shoot up 4-5 times a week would you????  If no you'd better think about addiction risks of benzos. 

 

I had no idea it would be like this.  Keep up the good work.  You're doing great. :)

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I have been on klonopin for almost 20 years.  I had a successful taper/discontinuation in 2009 with hardly any withdrawal.  Reinstated in August of 2011.  Started tapering from my largest dosage (1.5 mg a day) in the spring of 2013.  Jumped off/quit on April 9, 2014.  Reinstated January 8th, 2015.  Quit again on March 19th, 2015.  I hate these medications.  I am currently on Effexor 150 mg/day and 75 mg of lyrica 2 x a day.
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I'm having such a problem cutting down that one doc suggested that I continue taking my current dose even for many more years - until I get myself back together.  I feel like if I don't get off now, I'll never get off.  But it's so hard to keep going on this path. 
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[a8...]
I fit into this group and would like to follow to see how others are coping :)  Me, well pretty good actually given the length of time used and the cold turkeys.  Not 100 percent though.
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I'm having such a problem cutting down that one doc suggested that I continue taking my current dose even for many more years - until I get myself back together.  I feel like if I don't get off now, I'll never get off.  But it's so hard to keep going on this path.

 

I feel the same  :hug: but whats the alternative going backwards? I went in to tolerance withdrawal, was CTd's, and being put on and taken off many different benzos as well as lots of other drugs, life on them was awful and coming off benzos is super hell.

 

Compared to coming off Oxycontin high strengths, oxycodone, dihydrocodine, codine, lyrica, morphine, z drugs, anti seizures drugs, ssri's, AD's, you name it I was prescribed it for all my ''Illnesses'' I never had until I was prescribed 30 to 40 Ativan ( Lorazepam) per day which is + to 600 to 800mg of Diazepam( Valium). And got pulled off CT by a Doctor  :sick:

 

I took myself off everyone with no help support or back up at all and I live alone.Getting off this last 4mg of Diazepam I now got myself down to is the least of two evils as I was having many of the bad symptoms I have now while I was on them.

 

Obviously as the withdrawal intensifies things are getting worse, although this won't happen to everyone. BUT I remember another time when i came off benzos I felt great in a few short weeks which consisted of just feeling down over those few weeks. For about 3 months maybe longer I felt amazing, only for 4 year's of hell to break out with no warning plus even more misdiagnoses.

 

 

And many people said they regretted not sticking it out as each time they became ill again after going back to square one only to become worse then go through WD all over again, and each time it gets worse. I've gone through to much for too many year's to throw the towel in now because its bad and worsening I remember laying on the bed howling like an animal in agony when I was on the prescribed dose and not getting well just worse for nothing?

 

This time I'm getting worse because I'm on the way to getting well and having myself and my life back, thats the big difference in suffering this time, no way do I want to go back to end up here again but even worse?? This is already hell city and I'm planning to move out not back in. :thumbsup:

 

Nova xxxx  :smitten: :smitten: :smitten:

 

 

 

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Thanks for the inspiration.  You're right about not putting off the changes.  It's tough but your are very inspirational.  As for me as well if I were to just get put in a long-term holding pattern and stop cutting I could be stuck here forever.  There will never be a "good time" to finish what has been a nightmare.  Just don't know if I'll make it.  I'm trying.

 

Thank you. 

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Thanks for the inspiration.  You're right about not putting off the changes.  It's tough but your are very inspirational.  As for me as well if I were to just get put in a long-term holding pattern and stop cutting I could be stuck here forever.  There will never be a "good time" to finish what has been a nightmare.  Just don't know if I'll make it.  I'm trying.

 

Thank you.

 

 

 

Paul, I know its awful and believe me If I knew it wouldn't mess with my tapering and withdrawal I'd drink  bottle of whiskey and take a load of pills to escape for a while and carry on but it don't work , it only works against us. and I hate whiskey :sick: I've even thought about street drugs I did when I was younger when things where getting bad a lot earlier on and had no addiction to just partied and moved on from. As an escape from all this, but its all just lying to myself and I definitely wouldn't do it :o

 

Its just fantasizing seems to be an escape but I also put the consequences in to the big picture and this is hell enough, I play the  tape of the thought backwards to break the illusion. I start right at the end where the  gates to hell part two opens and hindsight is no longer a choice and fore sight has no chance of ever being because then its too late and hindsight is never any help.

 

So I stay in logical land where it maybe dreadful,  now but it CAN and it WILL be a lot worse to go pouring petrol on the fire and the other thing is, in that split second of giving in we may have been just about to turn the corner to better times and we screwed it up? As bad as it is that doesn't bear thinking about that we've waited a long time and just couldn't give ourselves a bit more time for things to get better for us? Hang on in there Paul  :hug: I feel like screaming and ripping my skin off even that hurts being on my body, but its going to get better. :)

 

Love Nova xxx :smitten: :smitten: :smitten:

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Thanks.  That was really nice.  My mind, too, thinks of taking a break from my tapering, even when I see my doctor.  He prescribes 15 days of meds when I see him every 14 days.  I always fight not to take all my pills early in the month.  I let my mind play with me tell me that if I took a couple of days off of tapering for a "vacation" that I'd be able to come back and do even better.  That's ridiculous of course.  But it's one of many things my mind ponders.

 

If I liked alcohol I'd really be in trouble with all of this.  Your post really helped.  I have to work tomorrow and I'm sitting here telling myself it will be hard,  I used to do meditation and casual visual imaging.  Some how I used it to help me with school, work, exercise, and many challenges I faced.  I know I should be using it for this and I don't.  I'll try and I need to think about this regularly instead of hiding from my own mind . . .

 

Thanks for the help and everyone keep healing. 

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10 years of 13 mg Xanax and 10 years of 10 mg kpin. No, I didn't doctor shop or buy off the streets or online or updosed, no rescue doses, no holds~~this is what my psych said was the right doses for me. Did a C/T off 13 mg Xanax and 40 mg of Paxil at the same time in a horrible detox center. Manged to stay benzo free for a month until I got out of that nut house. But could not function the entire time. I couldn't drive and forgot how to use the elevator. Forgot where I lived and phone #.

 

Was such a friggin mess that my pdoc put me on 10 mg kpin. Started slow cut and hold taper July 2014. 5% every two weeks. No s/x at all except for insomnia that eventually got resolved. Flew through the taper with no problems until I reached the .625 mg K mark. Hit the wall and ended up staying in bed for over a week. Two weeks ago, I tried doing daily dry micro taper~~.001 grams per day, 10 days out of 14 days and feel great. Oh, I forgot to mention that I was C/Oed to 70 mg of Valium. Micro taper, YES!

:smitten:

Bets

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You're doing awesome.  I see my doc Friday and I'm going to try to get him onboard for a really slow taper.  I don't think he quite knows how I feel.  He wants me to jump from 1.5 mg per day to 1.25. mg. per day.  I want to cut from 1.5 to 1.365.  I'm hoping he'll do it.  He just has to order wafers to get .125 doses.
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mybra,

 

 

thanks for starting this thread. after reading all the stories on this thread i don't feel like i am the worse one out there. although i am 32 months since the last c/t and still in pretty bad shape albeit healing slowly.

 

i have two benzo stories i like to call it and both are with very large amounts of different benzo's (mostly klonopin), large amounts of opiates and other polydrugging after being diagnosed with MS in 2002 of which i am getting more and more certain to do not have.

 

i was on large doses of valium and klonopin the first 15 years. and at the tale end of that about 5 years i was on a daily dose of 200mg valium, 20mg. klonopin and 30 regular strenth vicodin. the addiction and dependency was so bad that i had to steal prescription pads from the doctor's i worked for. i wrote my own prescriptions daily for 5 years and finally got caught and somehow managed to get off everything although i had a seizure in the process. never knew i needed to taper slowly.

 

i managed to stay clean, sober and completely benzo and opiate free for 7 years from 1995-2002

 

in 2002 i started having strange neurological symptoms that were very severe and like nothing i had ever experienced before. how would i possibly know that it could have been a setback or "aftershock" from being on such large dose's of benzo's and too many cold turkey's 7 years prior? -- that's when i was diagnosed with MS and the doctor started me back on klonopin for the nerve pain after he knew that i had trouble with it before and i really thought i would be able to "control & enjoy" the klonopin and be able to get off it with no problem. there are timese when i do wish to sue this doctor. i was honest and up front that i had been on benzo's before and had a very hard time. i do take full responsibility though.

 

i wasn't able to get off the klonopin and tried to taper for 9 years. i had gotten up to about 22mg klonopin again and lot's of opiates and added in this opiate cough syrup. with many cold turkey attempts yet again. finally this last cold turkey in 2012 i got off everything again and now i am majorly kindling. worse than any withdrawal i've ever had. almost died and don't know how i made it through or am still making through but i am.

 

thanks for starting this thread. i also started a "over 2 years and still kindling support group" if anyone is interested?

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Hi all  :thumbsup: I'm really RAF ( Rough as fk) right now with many WD sxs getting worse, I dropped from 4/12 mgs of Diazepam to 4mg 16 days ago and was going to micro taper using milk. Bit I'm now going to hold at 4mg  to give my CNS a chance to up- regulate then to where its more doable, as right now there's no way I'm going to ignore my body and just push it.  :D

 

I believe that's what happens when people think you MUST stick to a taper schedule as its written and thats the only way, but its not, time may be linear in this existence but healing is not. And we can use the knowledge we learn to our own pace, its not written in stone that you have to do or die at the same pace as others.  :-\

 

Their not you, and you struggle is as unique as you are, although its under the same heading, taper/withdrawal (one of many types of withdrawal or all types), kindling, you have to find your own rhythm and walk you own beat not dance to the same tune as others. So go as slow as you need pushing to far too fast will only result in crash and burn, or pain panic and going backwards never getting anywhere except for wishing you kept going forward on your journey.  :(

 

All we need to do is try not to obsess over time, I've been in a mess for year's as have others but I remember life before benzos. And I can see it even if some days it all feels and looks like a delusion, but the true delusion is losing the fact completely that the real you has been chemically put under a spell which we're now breaking. Just don't put a time limit on how long you should be getting to the end of your healing, every single second is a big step nearer during a taper and withdrawal, and so is the life we all want to be living.  :)

 

Nova xxxx :smitten: :smitten: :smitten:

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  Hi  everyone  :hug: I am posting River wolfs blog digest where he's cut his whole blog down to one more shorter and easily read version. He's a very wise man, and I find a lot of what he writes really helpful to read when things are getting too much.  :'(

 

I believe that others of you will find it helpful, I as do, I hope so. :) There is also link to his full blog on here under 'The wolfs den'  Nova xxxx  :smitten: :smitten: :smitten:

 

River wolfs blog for hope digest http://www.benzobuddies.org/forum/index.php?topic=96656.0

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Hi everyone.  :)

 

24 years here, now down to almost 7mg Librium (2.8mg Valium equivalent).

 

I have a lot to say but will come back here and post later.

 

Os.

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Hi all...been on benzos for 39 years since age of 16. I have PTSD, severe depersonalization, terror, severe anxiety, depression. Went through terrible traumas. Please see my posts under withdrawal support and general taper. I am now on .5 Klonopin 3 times a day using Propranolol and halves of Benadryl to get me through.  I was told by my pdoc

to c/t Xanax in January 2015 because he thought the K I am on would cover it. I also c/t the X for 2 months in October and November 2014. I think that was probably a big mistake.  I am in tolerance w/d and c/t X on January 24 2015. I never built a tolerance in 38 years until this year began. It may have been the X. Can't tell. I know that I am bedridden, don't want daylight, in anxiety like never before, don't want to see people,  can't even talk on the phone, and more. I feel I want to end it all because I can't tolerate this. I also ruminate all the time. Benzos saved me, they made me feel a false sense of well-being so I could perform (musician-singer all my life, comedian) but in retrospect they took my life from me too. I have not really been out of bed much for many years. I also have lots of severe, diffuse pain so I was on oxycodone for 3 years which I kicked c/t in August 2014. Mind you, I have most always (not always but mostly) took more than one benzo at a time with docs prescribing them that way. For instance I took klon and xanax together (even with the opiates) for many years. I have never escalated my meds and always kept towards lower doses like no more than 2 mg. Per day of K. But now I am in some kind of Hell. I have w/d with tapering a few times over the years for a couple or a few weeks. It wasn't hard then. But now what hapoened? They are ineffective hence the tolerance w/d. I tried the Ashton...Valium crossover but it never works well for me. Gave it three tries in the last several months. Took 10 mg. Valium to replace the .5 K last night after weeks on a 5 mg. V with a .25 K at bedtime. The V alone was bad ... the V with the .25 K ...That worked so I held it for a month. Been in inexplicable anxiety. I have good hours and a couple good days here and there but mostly in Hell. My therapist (idiot I think) says I need to get off quickly because he fears I will take my life if I have to go 8 months or a year with this suffering from a slow taper.. I also tell him I am going to end it so that's where he gets that idea. But I know I have to go slowly. I am holding at 1.5 mg. K a day. Getting rid of the V tonight or going to w/d incorporating the 5 mg. V with the .25 K at bedtime dose. I take my doses 8 hours apart. Please reply with your experiences. I tried to cut by 1/4 pill of K recently but couldn't. I am not stable to make cuts yet but want OFF of these. Yes I am scared, but they don't work anymore. I won't get on more to stabilize because it won't work. Glad you're here with me. Please stay. Need your help. V makes me anxious by itself. Will dry cut with scale straight from k when able. Will my GABA receptors EVER heal after all these years???

Marian

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I'm having such a problem cutting down that one doc suggested that I continue taking my current dose even for many more years - until I get myself back together.  I feel like if I don't get off now, I'll never get off.  But it's so hard to keep going on this path.

 

My previous doctor suggested I stay on a 'maintenance dose' of .25mg of Xanax since I appeared to be an 'anxious type', in her words.  I think my mouth actually fell open at her ignorance about benzos being 'maintenance' drugs…which they are NOT.

 

I told her so, too.  Blank look back at me.  Furtive writing in my file.  :laugh:

 

Anyway, fast forward to three years later and I am healed… and I don't have anxiety, I'm more relaxed than ever in my lifetime.

 

So power on, my friend, you're doing the right thing.

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they made me feel a false sense of well-being so I could perform (musician-singer all my life, comedian)

 

marian,

 

i too am a singler/songwriter/musician/artist. benzo's completely stole everything and more... second record just sitting there for over 9 years at producers studio who has given up on me. only released one record so far. just sucks doesn't it? keep strong and hang in there with your taper.

 

pretty

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