Cannot get off the benzo

Posted , 5 users are following.

I decided to get off Valium after 20 years on it, I started tapering in mid 2011.

I had researched this after I tried to drop 2mg as a headstart to a slower taper, all was fine for 14 days and then I woke at 4am with horrible symptoms; looping music at high speed in my head, bedsheets soaked with sweat, massive migraine and I felt like I had suffered a stroke, I called my GP after 2 days of waking up every morning with a snap and the same looping music, I felt like my brain had tured to mush, my GP advised on going back to my original dose as I cut more than half of what is recommended, 5 days later I felt 80% better and within a week I was completely back to normal, it was only then, for the first time in 20 years I realized how this drug was so much a part of me and had to find a safer way to withdraw.

A month later I started a daily taper, reducing small amounts every day via liquid, my health deteriorated rapidly, within 3 months I was bedridden, I suffered light sensitivity, became intolerant of TV, had paranoia, fatigue which worsened to the point where I could barely bath and dress myself, I could write a book about how bad that year was, it was awful, I became literally incapacitated but was lucky to have support at home,

Not to scare anyone but much of the pain and suffering could have been minimised but I tried to power through it and the reason I suffered as I did was because I never once held my dose in 7.5 months, whilst not a cold turkey experience, I crashed at 4mg Valium and hell opened up and I really hate using that word but it was indescribable, I had to updose a little and get stable as I suffered a huge panic attack and woke the next day to a feeling of intense dread with a feeling of electricity surging through me, the sound of a light switch clicking off would be felt through my entire body, it was just awful. 

I did manage to stabilize but the following month the weight just fell off me, I was seriously ill and I am amazed I did not end up in hopsital which is where I should have been, I was dehydrated and was quite traumatized by how bad the withdrawal was, I had suffered terribly for many months but I had no idea just how bad it could get.

I have no idea how but over the following 3 years I managed to eek my way down to 2.8mg, I have just held at that dose for the last year, I have improved somewhat and I have some semblence of a life back but I held for a year because even making microscopic reductions would throw me into a bout of anxiety so bad I would get sudden onset of derealization and within that time I would lose all rational thought, my partner would have to talk me through each tiny reduction,

I am stuck here now, totally stuck, so I have thought very, very long and hard about my future and have concluded that I will likely never get off this drug completely, the last few mgs are said to be the hardest and this has been my experience, some say it gets better at 2mg, others seem to suffer withdrawals until zero, but I'll be damned if I have to spend 5 more years trying to get off the last few mgs as any faster would not be safe for me, I just feel too mentally ill when I make even the smallest reductions now and as much as I wish to God I had the courage to cut 10% at a time, I just can't do it, I cannot taper this drug on my own any longer, it is too traumatizing for me and I would likely suffer a nervous breakdown if I tried.

I have given this all I have, four and a half YEARS and I am still not free and the last mgs are even harder, well, after now what is 24.5 years on this drug, I cannot see me ever being free of it and there is no way I could afford to detox and even if I did, the assault on my brain would likely take me years to heal, some poor individuals take as long as 10 years to fully recover, admittedly this is almost always from abrupt cessation but the time frame for me would be the same as I am a long term user.

I am of the opinion I would be better off reinstating, the implications of fully withdrawing for me are just devastating and I would have no quality of life for a period of time nobody can predict, for me, it just hasn't been worth it, I was fine ON the drug but the withdrawal has been literally life ruining for me and I have had enough of fighting this. I literally do not have the support I need around me to continue this fight, partners can only take so much, they suffer terribly also and I am starting to feel extremely depressed and who wouldn't after 4.5 years of suffering?

Personally, for me, in my case I think weighing up the good and bad, I would be better off reinstating, after all I have endured, I never thought I would hear myself say that in a million years but there is just no way I could manage to taper the remainder, it's just too difficult and I would likely end up in a psych ward if I even tried, after 24 year I am obviously chronically dependent on this drug to function now and getting off the rest would most certainly wreck more years of my life, I have reached my limit, had it been a case of it getting easier towards the end and not harder, and had it been a case of being healed at zero, I would taper for 5 years more to truly alleviate withdrawals as much as possible but some people experience severe withdrawals at the smallest reductions, this is partially brought about by the fear from previous trauma from bad withdrawal experiences, I get it, I get how it works but in my case, mind over matter doesn't cut it, I suffer horribly now when ever I try and reduce, I just can't do it any longer.

I wanted to be free of this but the suffering I endure, the fear and my mental state when I make reductions is so poor and my quality of life so badly affected, for me the only alternative is to go back on the drug and admit defeat, I can't spend years and years doing this, Lord knows I have tried and fought this thing so hard but there is a limit to how much anyone can take, the time frame alone doesn't make this worth it any more.

My advice to anyone doing this is to taper very slowly, I lost 70% of my dose in 7.5 months, for a long term user like myself, this proved to be way too fast, had I looked at a withdrawal period of 3 or even 5 years, I could have avoided damaging my nervous system on the way down and would have likely avoided much trauma.

This is a thing based on TIME and unfortunately, for some, this can take years to recover from, I read somewhere about half the duration of use, which would mean 7 years+ for me and that guideline appears to be true for me, possibly 10 years for a full recovery and even that would not be guaranteed, I read of such people at the start of my taper and dismissed them as being hypochondriac, now I believe them, there are many who came off these drugs far too fast and some end up with symptoms that are quite acute for many years, it's just terrible how so many doctors pull people off these drugs quickly.

In my opinion, those who have been dependent on these drugs for more than a decade should look to reduce their dose and see how they fare, under no circumstance should long term users be forced to withdraw against their will because to go through this can be one of the most harrowing experiences, physically and mentally, the very need for beta blockers and anti depressants to help people through withdrawal is testament to just how hard and long this road to recovery is for many and I think some who eventually do make it off these drugs may find their nervous systems are so compromised, that reinstatement is the only answer, those who remain free do eventually heal but for some long term users or high dose users, this can be a long time coming, those who make it say it is worth it. 

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12 Replies

  • Posted

    I will also add that there is a very real risk of suicide in some people who withdraw too fast and suffer constantly, people get through the acute and many people do gradually recover but not everyone can navigate suffering for such long periods of time without any idea when their brain and nervous system will start to heal, it happens but people must insist that they taper according to what they can handle and no faster and never, ever make reductions of more than 10% at any given dose as all this does is damage the nervous system. You have to live with the withdrawals, so make it as bearable as possible and insist on going at your own pace.
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    • Posted

      I would talk to your Dr and see if they can prescribe you some meds to help. That's what I'm doing. It doesn't have to be that bad. Just my experience. I've quit alcohol hydrocodone and am down to .125 MG of k all at once. I'm taking meds to help but it has made it a lot better
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    • Posted

      Good going Jason.

      I have considered Mirtazepine but I really did not want to start another medication to try and get off another, I could possibly have made this somewhat more tolerable but I'm not so sure, some people can taper off Mirtazepine without issue, others have a hell of a time getting off it. 

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  • Posted

    I'm so sorry for the absolute hell you have suffered and continue to suffer.

    I am a long term user, was on 18mg diazepam per day, had a 'breakdown' and increased to 20mg per day, actually my 'breakdown' was probably caused by tolerant withdrawal, no doctor will admit it but it matches evey symptom and updosing has done nothing for me, I am much more agoraphobic now and so unsteady on my feet that I can rarely walk unaided, can't bath or shower unaided etc and this is on the drug so god alone knows the hell you must go through in actual withdrawal.

    I want to taper but intend to do it incredibly slowly, 0.5mg and hold for a couple of weeks, maybe not even get off completely but at least make a reduction.

    It's a nightmare of a drug it really is, to think that my updose was 2mg 5 weeks ago and just to get back to the dose I was on prior to that would take 8 weeks cutting at 0.5mg fortnightly is scary in itself.

    I understand why you feel the need to reinstate, before this tolerant withdrawal started and my life was manageable I was too scared to even consider a taper, I didn't want to rock the boat because at least I was stable and if I had to swallow the pills however useless they may be I saw no reason to put myself through it.

    I wish I could help you and advise you but I am so new to the bad side of these drugs myself, for years I took them, thought little more about them and got on with the business of living then literally overnight hell began and I started having withdrawal symptoms despite maintaining my dose, I'm still in a state of shock and confusion to be honest and am tryng to be brave enough to start that taper in a few weeks, I want to get through my daughter's birthday first before I start.

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    • Posted

      Thank you BellaLuna, so sorry you are having a hard time. All I ca say is taper slow, no more than 10% at any given dose and use good holds. I wish you all the very best in your taper.
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  • Posted

    Oh Whirlieg so sorry to here of your plight. One of the main problems as I understand it is these drugs over time change the chemistry of the brain. I have tried mirtazapine.It Is HIGHLY sedative oddly enough the lower the dose the more sedating it is.I took it for about 4 months I did not have any problems coming off,but I have heard horror stories about it from others.But if all else fails it might be worth a try.I live in the US where psych meda are given out like candy.Some of the most frequent adverts on tv are for these meds urging people to ask there drs for them. It is a shameful exploitation of those who suffer from the many forms of mental illness,or as I prefer to call it BRAIN disease.Peace to you.
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  • Posted

    HI Whirlieg9, I'm sorry it has been such hell  I got in trouble on patient, got suspended, for trying to warn people of the dependency to benzos and how damaging they can be.  There are so many people on here popping benzos willynilly and they are in for a world of hurt some day.  They should not be used as a daily med!  

    When you say reinstate, you are still on a portion of dose you started tapering from, right?  Your nervous system has done some healing throughout the withdrawal process you have endured, and so there is no need to reinstate all the way up to where you started.  You could try a small increase and give it a good week to see if it brings relief.  I figure less of the drug is healthier than more of the drug, even if you never come off fully.  These drugs do have long term health conseqeunces.  So, why not try a small updose rather than the full amount?  Besides, it is risky to go back to the starting amount, could have a paradoxical effect and even cause an adverse drug reaction, as your nervous system is extremely sensitive to change now.  

    Are you on any of the benzo support boards?  I know it is accepted by such support forums that some people will never be able to come off entirely, but they would also caution you to go back up by too much too fast.

    I hope you can find some relief.  I agree, trying mirt could be disastrous for you.  Your system is hypersensitive to anything; you might not even be able to tolerate certain supplements or foods.  ADs also cause dependency so not good to get hooked on yet another drug that can lead to health problems with long term use.

    It's a shame that none of our doctors warned us along the way.  I'm a 20 year AD user trying to come off as well.  

    Hugs to you!

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    • Posted

      Thanks Betsy.

      No, I would not be looking to reinstate to the original dose, certainly not in one go, I would just increase my dose to try and find some relief, this is what I have been advised to do by my doctor but "stable" is subjective... I will, however, do my best, I haven't gotten this far without a huge amount of suffering so I am not keen to throw that all away but at the end of the day, my quality of life is what is more important to me now, 4.5 years of misery is a very long time, I am getting pretty desperate to live life again now.

      I wish you good luck on getting off your med, I know nothing about AD's but my previous doctor also advised me against going that route, I see no point in adding more drugs, there comes a point where enough is enough, I hear they can be as hard to taper as benzodiazepines for some people, hopefully you will have an easier taper.


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    • Posted

      I don't blame you for wanting relief after 4.5 years!  I already had a failed attempt to come off Effexor after 12 years of use and 8 previous on other ADs, went through 10 months of protracted wd before reinstating...since the WD was slow to come on, nobody recognized it for what it was, thought I was relapsing, a very common story with ADs since WD symptoms include anxiety and depression!  So, now doing a micro taper of Effexor.  Also ended up on mirtazapine before reinstating, so I am doing the 10% taper on that one.  It can be quite a cruel drug to come off for some.

      I hope you find your magic dose for relief and that it doesn't take much to get there :-)

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