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Jumping today from .25 Valium. Any insights?


[ph...]

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Hello,

 

I lived abroad in Japan, and while having some sleep / anxiety troubles, I was prescribed Benzos. I honestly, truly, had no IDEA what Benzos were, or that they even existed, and I did not even know what medicine the doctor put me on, because they were medicines that do not exist in America, and were explained (or not explained) in Japanese, with thousands of Kanji. The doctors there are not really doctors - more like drug salesmen - and were not inclined to help, but I trusted them. I took close to the amount they said, (actually about 50% less most times) and hoped that they were harmless meds, like they claimed. I even ASKED if they were addictive, and I was told that they were not. No withdrawal. Nothing dangerous. So they said. I was on several different benzos for sleep, and xanax. It wasn't until I started feeling really ill (tolerance) that I decided that I had to stop, no matter what, so I quit for about two days. Palpitations, sweats, shakes, the works. So I did some research on the newest one they had put me on - Xanax - as I knew that at least THIS drug was something I could get some information on, and that is how I found out about benzos. I found this forum, I read Dr. Ashton's manual, and I started a taper. That was about 3 months ago.  Every medical "professional" I talked to told me to quit cold turkey, or to taper for "six to nine days". I obviously did not follow their advice. After much work, I received liquid valium, and after my crossover and reductions cutting pills, went to the liquid. I did that for a few weeks, and now I am jumping from .25

 

Is this a mistake?

 

Let me explain my confusion: I know that a lot of people on this forum (and Dr. Ashton herself) recommends no more than 10% reductions every 1-2 weeks. Nevertheless, I reduced much faster than that. I started at the equivalent of about 30 milligrams of Valium, but when doing the crossover, my doctor, in his infinite wisdom, only prescribed enough for 12 (or was it 10). By the time I jumped over to Valium, I had reduced down to about 15 or so, and so I had a rough time with the crossover, but it was alright. Next, I tapered. At first, I was cutting at 20-30%. Had a few rough patches, but nothing I couldn't handle. Then, after I was below 5 milligrams, things got rough, and for several weeks I was reducing 10% or less. But, after things stabilized a bit, I was able to cut more - back up to about 20%, and at some points 30%. I really never needed to go back down to 10% cuts. Oh, and I cut every 6-10 days, after 5 milligrams it was usually on day 8 that I made a cut. After I reached 1 milligram (dry cutting) I went to liquid. I reduced around 20%, until today, when I hit the 9th day of .25 milligrams, and I am now jumping.

 

So as you can see, those are not Dr. Ashton numbers. But did I suffer? A little. Not really. In fact, it was much better than I thought - except that first two days when I tried cold turkey. So, why is it that there seems to be a unanimous agreement that 10% is a hard fast rule? I paced myself as "fast as I could reasonably go", and it seemed be hovering somewhere around 20%.

 

That being said, what do you members think about seizure risk, at this low of a dose. And to summarize: my entire taper was about 3 months. Could I be at some sort of severe risk for seizures or horrible withdrawal symptoms, considering what I've told you, or has that worry passed? It seems unlikely to me that I would suffer some sort of nightmare withdrawal (like many described on this forum) at such a low dose, after a 3 months taper, but then again I could be horribly wrong. Anyone with a similar taper schedule or #s as mine?

 

Phil

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The seizure risk is extremely low and almost non existence. It is nothing you should be worry about. I think you were wise to not listen to instructions to CT or do a rapid withdrawal. It looks like you have done a sensible taper and at .25 mg, it sounds like you are ready to jump! How exciting! :smitten:
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You're doing very well so jump for joy. Not everyone needs the 10 percent rule although most tend to follow this and are still often hit with sxs much more severe than yours. CT is probably never right but you've seriously done well and that .25 percent would not be considered therapeutic for most anyway. So get off them and heal. I'd be grateful that I was so lucky. Seizures in your case seem so extremely slim unless you have a seizure disorder. I'd go out on a limb and say if you're otherwise healthy your risk is zero. B
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Thank you everyone, for your replies! They made me feel much better. If some craziness hits me, I will post again :) Let me know if anyone has any questions for me.

 

 

Thanks again,

 

Phil

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Hi Phil,

 

Can you say how long you were on the meds for before you started to taper off/stop? also what what dosage did you start on and how many times per day - ta :)

 

 

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Oh, I thought I put that. I was on the meds, various amounts (never took it as prescribed, but randomly. Sometimes skipped a day, sometimes for a few days, but never the full amount they prescribed) for about 4 years (sleeping pills) and xanax was about 6 months or more. Maybe 1 year maximum?  The xanax was never more than about .4, and the sleeping pills were around 10 or 15 valium equivalent max, many times less. It is really hard for me to calculate or say what I was on, because I honestly do not know. I thought these were harmless meds and as such I did not need to keep a diary of my dosages. I do know that the sleeping pills were the ones I was taking longest. I did not start xanax until much later when I complained about panic attack chest pains (which I now know for sure were caused by the benzos, not from any panic). In any case, my dosage, total (my guess), was around 30 milligrams valium equivalent, at the max... from what I figure.
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By the way, I am now experiencing those chest pangs again... but infrequently, and much much less severe. I also have a headache, and am trembling slightly. So far, nothing too bad. Still sleeping alright. Not a ton of energy, and generally feel crappy (and I can tell the symptoms have yet to peak, but are building). I am on day 5.
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most people don't go through hell discontinuing benzos. It's a small minority, compared to the many millions of people who take them.

This contributes to the absolute lack of awareness of just how bad a bad withdrawal is. Everyone knows people who've taken them with very few issues.  It is one cruel fucking drug for the rest of us.

You've dodged a bullet. Don't ever touch benzos again, some of us like me used them ten years ago and stopped CT without an issue, only for them to later demolish our lives down the road...

 

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[ca...]

most people don't go through hell discontinuing benzos. It's a small minority, compared to the many millions of people who take them.

 

 

 

I'd like to add and respectfully suggest we aren't a small minority.  Perhaps we are lucky to be able to get off these drugs, but Ashton herself suggests more than 30% of people will have trouble discontinuing these.  My former doctor told me 50% of his patients had trouble discontinuing these drugs with symptoms.   

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In my 'journey' I've met 5 doctors who have never once encountered anyone suffering from acute benzo WD. That's including an 'addictions specialist'.

These drugs are so widely used that the vast majority of users can stop without life changing / wrecking consequences. If it were otherwise, everyone would know someone who had gone through benzo hell.

It would have been a major news story worldwide. We've see drips here and there but broadly speaking there is no recognition of benzo WD beyond the community of those who suffer from it.

Most people get away with virtually no or very mild WD.

Ashton's guide of 1mg every 2 weeks is appropriate for people who suffer mild sxs. It's impossible for the small minority of us who suffer badly in WD.

This is a self selecting community of the worst harmed  by

Benzos.

We represent only a tiny fraction of those who use benzos. They are among the most widely prescribed group of drugs in the world. Valium was the most widely prescribed drug of the seventies and I believe Xanax is in the US today.

I had never heard of this withdrawal agony before I encountered it myself. No one I have tried to explain it to (and oh have I tried) has ever heard of it. Everyone knows someone who has takEN Valium without undergoing a medical crisis when they've stopped.

If it was devastating the lives of 30% of users, a critical mass of awareness would have grown long ago and the drug would probably have been banned. And acute withdrawal is simply devastating. I'd go so far as to say if 5% of users were so afflicted, it would be much more widely known. It would still be millions of people. There is virtually no awareness of acute WD in the UK, with one under staffed helpline. There's no benzo specific support services in the US *at all* as far as I can tell.

Users here from Scandinavia report absolutely no awareness from medics of the need to slowly taper.

If 30% of the users in Sweden went through serious WD after being RTd by their docs, it would be a national scandal as many thousands of people would be rendered non functional.

But it isn't, and the only logical explanation for that is that the vast majority of  people just don't suffer the way the typical poster here does...

The OP here probably went through worse WD than most users and what he describes is extremely mild compared to most users here.

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Yes, I'll chime in and respectfully add that a local compounding pharmacist, who discussed a liquid taper with me that I eventually decided against, said that he was impressed that I had gotten so far (at that point I was about halfway through) in my taper as he had so many patients who had tried to get off benzos and just couldn't do it.  I know of a couple of other people, friends of friends, who tried - and couldn't take the pain/suffering.

 

Another reason to feel good about the fact you and the rest of us are managing to reduce and taper off...it's such a difficult thing to do!!

 

I know of two wonderful internists in LA who are benzo wise and who not only will not renew benzo scripts without discussing the hazards with their patients but who acknowledge how difficult tapering is.  I spoke to one of them about my particular benzo - Klonopin - and he just said, "go very very slowly..".  I only wish either of them had been my doctor when I first began taking Klonopin.  They would not have allowed me to end up in the situation I was in, in 2014 when I began my taper - or in 2013, when I hit tolerance and DOUBLED my dose of K to the amount prescribed by my local internist.  Sigh...

 

Water under the bridge....I'm done with my taper as of today.  Now it's just a matter of time for me to fully (hopefully) recover.

 

Mana

 

P.S.

 

Belfast,

Just read your post.  Yes, they are among the most widely prescribed drugs after statins and the opiates.  I can't tell you how many people I know who are on either Xanax, Valium or Klonopin.  Here's the difference....those who only take the meds sporadically - especially Valium - have no trouble not taking it, although it becomes a kind of safety blanket to have around.  I used to use Valium for a variety of things :fear of flying (and I traveled quite a lot), back problems, and extremely stressful situations either at work or family related.  I WAS NEVER PHYSICALLY ADDICTED TO IT.  NEVER.  For one thing, I never took it daily.  For another, the amount I took was so small, relative to my 1-2 mg of Klonopin (never more than a 5 mg tablet of Valium and that only occasionally.)

 

Enter Klonopin, which I began taking every day, as prescribed for situationally based panic attacks.  HUGE mistake.  I had no idea that taking K on a daily basis, could absolutely ruin my life as it has during these past two years of tapering.  BOTH of my brothers take Klonopin - one because he has serious medical issues and may never go off of it but the other for simple insomnia, Rx'd by his GP.  I begged each of them to reconsider, find an alternative - I told them how awful withdrawal was...they didn't want to hear about it.  Probably thought I was over dramatizing my situation.

 

All this to say that yes - millions of people are taking these drugs but millions of people are NOT tapering them.  MOST people who take them continue taking them because they work so well...until they don't and one has to increase or face tolerance w/d or a taper.

 

More and more doctors are realizing the dangers, though, and are becoming more careful with their prescribing practices.  I'm seeing it here in CA....give it time. 

 

 

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Oh I agree that these figures are distorted because of the silent many who just never stop taking them.

After taking them in the first place, the second biggest regret of my life is that I tried to stop taking them. I wasn't having any issues, I was just concerned that I was taking such a high dose. When WD hit me I panicked and became obsessed with getting off them. I think most people just ask to go back on the full dose.

I then plunged into many months of appalling hell where I simply couldn't get stabilised and became profoundly ill. I lost my career over it. It was utterly devastating in every area of my life.

It tears me to pieces inside that if I'd just kept taking the pills at full dose I'd have probably been fine. Or at least not with my life in utter ruins.

And in the past year of unremitting hell since I started trying to get off, I encountered  *one* person in my city who was familiar with what I was going  through. Out of hundreds I tried to explain it to.

I sent a mass email to former colleague trying to explain exactly what had happened with evidence and links...but one person believed me. The rest were clearly utterly sceptical and just thought I'd lost my mind.

The cruellest bit of WD is people's unwillingness to accept that you're suffering a truly profoundly awful illness, and the humiliation. :(

 

My life could hardly have been more destroyed by these pills. I was a highly respected professional of 22 years standing, on a very good salary, with excellent pension etc. And I loved my job.

I'm now long term unemployed and living on disability. That's 5% of what I was previously earning. We have just about not lost our house. And every single doctor I met on this journey into hell made my situation worse through sheer ignorance.

 

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Oh and I was prescribed them for grief.

Which is specifically forbidden by the UK guidelines.

 

Well I certainly have plenty to grieve now.

 

The drug companies KNOW what this does. There should be trials, and life sentences.  Scum. The hurt they've caused my family. Bastards.

 

edit: content

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[ca...]

There are many benzo pioneers over in the U.K. such as Malcolm Lader, Barry Haslam and the late Reg Peart who devoted decades to exposing what they referred to as the benzodiazepine public health disaster.  Can you imagine if the millions upon millions who take these try to discontinue?  I think you'd see a minimum of 30% with severe symptoms.  We are a population who has been ignored and by the medical community.  There are many papers about this and I'm happy to link you to them if you'd like.

 

 

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I contacted at least 20 experienced journalists about my own case.

People I've known professionally for many years.

The problem is that the first time they call a doctor, or any NHS management press office, they're quietly told off the record that the person making the claims must be mentally ill. And yes, withdrawal does make people mentally ill.

There are such enormous vested interests involved. And successful legal action would literally bankrupt the NHS.

It's truly Kafka esque.

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Belfast,

Our emails keep crossing.  We are saying the same thing...I feel for you, having lost so much.  And yes, it is truly awful -- adding insult to pain - that so few people either know, care or are willing to learn about and understand and believe what we know to be true.

 

Who knows what would have happened, had you remained on the drug?  I've often thought the same thing but not for long...I needed to get off Klonopin and just hope I can fully recover and heal from what has been the absolute hardest thing I've ever tried to do.  No redeeming aspect to it...unlike the stress of a demanding career, or anything else i can think of which is traumatic or painful emotionally but which is something you can work with...withdrawal, to me at least, was simply a thing I needed to endure.

 

Willdoit,

Just read your posts and your signature.  Good luck with the balance of your taper.

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[ca...]

It's criminal what is happening and you're experiencing is sadly, the norm.  I do believe change will happen slowly.  Thank you for having the courage to speak to your colleagues. 

 

 

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The BMA basically admitted there was a massive problem when it issued renewed guidelines recently.

 

It is just mind blowing that a GP - a non specialist idiot workhorse - has the power to prescribe pills of such horrific potential harm.

 

I'm now on my sixth doctor, and finally - but too late to salvage anything for me apart from my continued existence - he gets it. 'Far harder to get off than heroin,' was the first thing he said to me. The GP who put me on them airily RTd me from 35 to 14 in six weeks and put me in a psychiatric unit. Then denied the pills had anything to do with it.

 

I am frankly surprised there haven't been instances of people lashing out physically at those who have caused such ruination to victims and their families.

 

edit: profanity

 

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Yes...I've thought of all kinds of ways to confront and/or retaliate..and yes!  I'm also surprised more people haven't taken some kind of action...it is horrific and the docs who do this wash their hands...

 

When I called my local internist's office, the one who kept renewing the script without warning or even calling me in to discuss the dangers, I was told he didn't taper people off the drugs.  He really didn't like prescribing them...? well then why DID he do it?  why did he Rx 2 mg K for me when I only took 1 mg..for 3 years, then happily kept renewing the script for another year at 2 mg x 30 per month?

 

Of course, in the end, I should have been more responsible and less trusting...I recall asking my current psychiatrist, the one who has been helping me taper - allowing me to design my own taper with the help of BB's here - I recall asking her if there were any long term side effects (I was thinking cancer, or something like that) from taking K...that was when I doubled my dose and went to see her b/c I was having terrifying intrusive thoughts.  She said, "your body can build a tolerance"...well to someone who has never been addicted to anything...what did that mean?? It sounded pretty benign.  In retrospect, I should have researched it.  The information was all there...it's in Wikipedia for God's sake.  I don't want to blame her as she has been a huge source of support over the past couple of years.  I doubt she had ever had a patient who she had tapered successfully off of Klonopin before - or at least not one who had had such a difficult time.

 

BTW...I agree...that GP ought to be tortured...what I'd like to see is for people like that to be force fed a benzo like Klonopin or Ativan daily for a few months and then rapidly tapered off of them.  How about three weeks?  10 days?  Then they could decide whether the drug caused their pain or whether they were "disturbed".

 

 

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I don't accept that we should in any way blame ourselves.

NO ONE would take this stuff if they were told of the potentially life destroying consequences.

And no one is told.

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I don't accept that we should in any way blame ourselves.

NO ONE would take this stuff if they were told of the potentially life destroying consequences.

And no one is told.

 

Belfast, you are correct.

I was not 100% myself when I was given klonapin as I had to wait 2 months to find out if a medical procedure had worked ( I was not mentally incapacitated, but I thought I might die) so was not really in the frame of mind to investigate things.

I was given 30 days supply and then the prescription was renewed over the phone. When my results came back negative and I did not need the klonopin anymore was when the shit hit the fan for me, many people are not in the same short time frame and I wonder how many of the millions do have a problem but are not aware of it?

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