tapering

This post is just an outline of the tapering process and a little about my personal experience with it, since I’ve been asked about how it’s done.

Benzodiazepine withdrawal for many people is agony, plain and simple, mentally and physically. The list of possible adverse effects from withdrawal of the drug and the way these symptoms mimic other serious illnesses is staggering. The various types of adverse effects are difficult to sort out – there is tolerance withdrawal, inter-dose withdrawal, and symptoms that are part of the body’s attempt to readjust and heal. 

Having been chronically ill and debilitated most of my adult life (50 years), with severe symptoms that have been poorly understood medically and largely misdiagnosed.. Recently I’ve come to the shocking realization that probably most if not all of my symptoms can be traced to benzodiazepine withdrawal. 

Once I had the proper information, I knew I had to commit to a new tapering process that I had never known how to do before. Even as knowledgeable as I’ve been about drugs, there was so much I didn’t know about how to get off these drugs safely, and it took quite more research to put the program together.

Some people have a relatively easier time of withdrawal, but for many it can be brutal for an extended period of time – weeks or many months. Symptoms can remain for years. But generally, with proper tapering done systematically according to guidelines, people can heal.

Tapering properly with the least discomfort possible is always a challenging navigation. The person’s own individual responses are the most important considerations. But there are good guidelines that provide essential support. For me, the process is a bit more complicated because of the way that I took the drug before. First, a bit of background.

The gold standard for methods for withdrawing from benzos safely is the Ashton Manual. Dr. Heather Ashton was a British psychopharmacologist and physician, known for her clinical and research work on benzodiazepene dependence.

The manual is available as a free PDF online or Kindle book. (I’ll provide details in a future post on Resources). Unfortunately, most doctors prescribing benzos are unaware of this information and have no idea of the importance of tapering off these drugs in a very systematic way. The drugs are given with no proper plan for safe tapering beyond just taking smaller doses or going cold turkey. 

Quitting cold turkey can exacerbate symptoms and can actually be very dangerous. 

The kindling effect has been described in the literature as the way the nervous system remembers a previous cessation of the drug, even years later, which often results in an even more severe withdrawal experience the next time withdrawal is attempted. In other words, if you took benzos years ago but didn’t taper properly, you might still be having adverse effects from that (misdiagnosed as a different ailment), and if you take benzos again you will likely experience a more severe withdrawal.

SAFE USE?

As of 2020, there is a new FDA black box warning for these drugs. They should never be used for more than 2-4 weeks at most, and then should be tapered. But there are no guidelines given by the pharma companies for safe tapering.

In my opinion, the drugs are never safe, and it’s easy to become complacent that you’re taking them only “once in a while” which “shouldn’t be a problem.” It’s a very slippery slope that even the most savvy user is subject to.

So I studied the Ashton manual and have consulted with many professionals and patients who have experience with proper benzo withdrawal. That’s where my tapering journey begins.

Previously I was taking Valium sporadically for decades, sometimes Oxazepam (Serax) which is a shorter acting benzo, and in fall of 2021, a month of Ativan, another relatively short acting benzo. But only very low doses and only at night for sleep, never every night. 

FALLACY #1:

Intuitively we’d think that taking these drugs only when needed and as infrequently as possible, is the best way to minimize adverse effects. Wrong! I discovered recently, only from deep digging into the literature, that taking these drugs erratically means you are going into withdrawal on a regular basis and potentially (usually) suffering adverse effects from that.

Most people don’t realize that if they’re taking a benzo only sporadically, they’re probably in benzo withdrawal much of the time. They also don’t realize that such withdrawal can mimic the symptoms of a multitude of chronic illnesses. 

So this means that taking a benzo sporadically can likely account for many of the chronic symptoms that people experience.

FALLACY #2:

It’s generally believed, even among doctors, that shorter acting benzos are safer because they are eliminated from your body faster. That seems intuitively correct, but it’s false. The shorter acting benzos, such as Xanax or Ativan will leave your body faster than a longer acting benzo like Valium. But the drug acting for a shorter time means you may go into withdrawal sooner. In other words, if you don’t take it every day, or at a frequent dose needed to maintain an even blood level, you may experience withdrawal symptoms much sooner than you would with a longer acting benzo.

So it’s strongly recommended that before trying to taper off, you should switch to a longer acting benzo if you weren’t taking that to begin with.

The Ashton Manual describes this process in detail and provides proper protocols for tapering safely from each particular benzo drug. 

The general guideline is a 5-10% decrease in dose every 2 weeks, which has to be adjusted along the way according to individual responses. This tapering schedule assumes that the person has been taking the drug every day, so they have a consistent blood level, and can begin tapering from there. 

Most doctors prescribing these drugs are not “benzo-aware” and aren’t familiar with the Ashton Manual or how to advise patients to use these drugs and wean off them with a systematic tapering protocol.

MY EXPERIENCE 

In other reports I’ve detailed my history of using benzos as prescribed, sporadically over the decades. I never tapered in the past, just stopped taking them many times, and when I was taking them, I used very small doses sometimes once a week. Doctors always assured me that this was safe! It wasn’t.

In fall of 2021 I was given Ativan which I took every few nights for a month. I had the most painful and torturous symptoms of my life as a result, although I didn’t know it was from the drug at the time. But suspecting that the drug was causing some of the trouble, I went back to Valium, again sporadically. 

I have been very ill ever since, and could possibly still be in withdrawal from the Ativan even a year later, not to mention all the Valium.

I have only taken these drugs for respite – when in agony, when the desperate need for sleep seemed to outweigh any possible adverse effects, when NOT taking a dose seemed cruel and inhumanly punishing. When all the other possible sleep aids never helped, and there weren’t any safer options.

The last month of the Valium taken this way, I had it at night for 14 nights out of the month. So I was in withdrawal all the time, I now know. I had to get on a regular taper schedule, but I didn’t want to dose every single night which for me would mean taking even MORE than before (updosing.)

I contacted a benzo withdrawal expert in England who provides individualized tapering plans as a service free of charge. My schedule is a 5% decrease every 2 weeks or according to how I’m responding to it.

I started by dosing every 2 nights, as an average of how often I was taking it before, so I wouldn’t be taking it even more often. Because of Valium’s long half life, that could possibly be often enough. But I wasn’t doing well with every other night, going through horrific “inter-dose withdrawal” symptoms. So we decided that I should try splitting the dose so I’m taking half dose one night and half the next, to keep the dosing and my blood level of the drug even.

Adjusting to that dosing has been a rollercoaster, but I’m hoping things settle out soon. I need to play by ear how long to stay at each taper dose before decreasing again. 

Because I started at a relatively low dose, my tapering plan won’t take as long as some. Generally it’s best to go as slowly and gradually as possible. You feel like you want to be rid of the drug as soon as possible. But to taper faster than your body can adjust and heal would be sabotaging the healing process and prolonging the agony of withdrawal symptoms.

More reports to come.