Two years ago, when I first felt the dizzy confusion of benzo disability, I talked about it openly. I remember discussing it briefly with an older friend who found my plight strangely fascinating. He asked if I remembered Quaaludes, a sedative-hypnotic that was all the rage in the 1960s and ‘70s. “We called them ‘Stumble Biscuits,’” he told me, “because you’d stumble down the street and hit one car and then stumble over and hit something else and it was just happy and goofy. It’s too bad they took them off the market. Those things were great.”
I was stumped. Stumped by the Stumble Biscuit and stumped by this person’s casual admission of recreational stumbling. Quaaludes were pulled from the market in 1982, ostensibly because of the thin line between “lude” euphoria and overdose. And benzos are one of the drugs that have arrived with fanfare to take their place. However, while benzos (similar sedative hypnotics that increase GABA function in the brain), may make one stumble, the larger problem is one of benzo disability. The stumble is not a euphoric high; it’s a slow trip into increasing neurological, GI and muscular disability.
My own trip down this dark path started with insomnia. I was sure I’d been cursed with Fatal Familial Insomnia, a rare disorder found in a singular family in Italy that results in death. I went days without sleeping. The once solid line between dream and waking states started to blur. I was a danger to myself. I was a danger to my child. So when a thoughtful doctor told me to take Ativan nightly for as long as needed, I did. Six months later, I began to slide into a hazy and uncharted disability.
Through sheer luck I discovered Dr. Heather Ashton, a UK doctor and researcher who has spent over thirty years studying benzodiazepines, their effect on the body and how to get off them. Her website listed a remarkable array of potential withdrawal and tolerance withdrawal symptoms for those who had taken benzos for more than a few weeks. I went down the list, stunned that all my symptoms could have a singular cause. The electrical shocks that convinced me I had a neurological disorder? Benzos. The inability to eat (thus losing twenty plus pounds) because it felt like a pit bull had seized my gut? Was it irritable bowel? Could I have Crohn’s disease? Nope, benzo withdrawal. And what about the thinking problems – the numbness and tingling? I’d had repeated falls down stairs, in the hallway and in the grocery store buying milk. And what about that time my vision had blurred, nearly going black while I was driving on a street heavy with traffic? No, not multiple sclerosis. Benzos. And all of these symptoms had appeared simply because my body had reached tolerance to the 6mg of Ativan prescribed by my doctor. I could not work. I could barely think. I was a writer who could neither read nor write. I was a mother who could barely hold her young children for fear of falling. I was, after eight months of following doctor’s orders, disabled.
I’m reminded of a friend I knew years ago. She was a bright, beautiful redhead who’d suffered for years from constellations of symptoms that no one could diagnose. She saw doctor after doctor who claimed she had trigeminal neuralgia, fibromyalgia, gall bladder obstruction, Crohn’s disease. I watched her fall slowly away from her life, getting organs removed and having innumerable, expensive tests done to check for neurological disorders, multiple sclerosis, heart valve leakages and on and on. Nothing was ever discovered and my friend continued her deterioration, finally having to move into a care facility where she is to this day.
What I didn’t connect at the time was that this beautiful, bright redhead had been using something she called “Special K” for well over a decade. She’d casually offered some to my then boyfriend when his mother had attempted suicide. “There’s nothing addictive about Special K,” she’d said, “it’ll help you get over this rough spot, honey.” I have no idea how much she used, how often “rough spots” equated with daily use but her prescription was, she said, refilled every month without any kind of consultation with her doctor. They both believed, it seemed, that Klonopin was a benign little pill.
While I can never tease out the murk of my friend’s disability, it’s inevitable that I compare it to my own. And while doctors may offer explanations for my own innumerable symptoms, I can simply say that once the benzos were gone, the symptoms were gone. The evidence is overwhelming that long-term use of benzodiazepines can lead to disability.
And my concern, after having witnessed my own deterioration and that of others, is that few prescribers or patients are looking at the connection between benzos and disability. It seems an easy thing for prescribers to review a patient’s medication, but in this age of shorter patient visits and insurance dictates, the direct line is often the one not taken.
We can’t continue to stumble here. Too many have stumbled and lost. We must continue to inform ourselves where we can. We must continue to press for intelligent and informed prescribing. We must speak well. And where we are not heard, we must endeavor to shout.
* * * * *
Yet another important issue we should be talking about to the public. benzos are given out like candy to people who have never seen the inside of a psych ward. Most people are not aware of how much at risk they are from this dangerous class of drugs. This is yet another issue where we might get the general public to see how they too are at risk.
And it is the general publi c we have to convince.
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True. they are given as sleep aid, muscle relaxants for chronic pain (I had to almost fight doctors who wanted me to take them instead prescribing physiotherapy) or even as mild sedatives for people who suffer exam stress etc.
And I have not yet heard about any doctor warning about possible side effects or withdrawal. In fact these drugs are described as “mild, very safe”. Hell yeah.
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Absolutely, Ted. And the language we use around benzos in common culture must also be changed. Language helps us define the way we perceive things. Once language changes, perception changes.
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Thank you Melissa for speaking out about your experiences. You are a very courageous woman and many people need to hear what you have to say.
I just want to remind your readers that other people who may have been disabled by long term use of neuroleptics for ‘psychosis’ such as my daughter, may find that benzo’s, used wisely, may very useful in dealing with the psychosis sensitivity caused by toxic neuroleptic withdrawal. So, my first point is that they may be a place for benzo’s, mainly to get off even more neurotoxic and disabling drugs.
Keep on speaking out! No matter what poison we or our loved ones were given, we all have one thing in common: lack of informed consent, a broken clinical trial system that prevents prescribers and the general public from knowing all the risks of psychiatric drugs, we were bamboozled to believe that we or our loved ones were suffering from a ‘chemical brain imbalance’ which got us on this road in the first place, and perhaps most importantly, we are pioneers leading the way, sharing our experiences on the internet to make up for the shameful lack of research as it concerns psychiatric drug withdrawal.
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Ahhhh, the old “take a poison to cover up the effects of another poison” argument. Problem is, then you get dependent on benzos and have to go through the nightmare of coming off of those. Good luck with that. It’s a hell on Earth I wouldn’t wish on my worst enemy (other than the doctor who got me involuntarily dependent on them, that is).
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I think there may be use for pretty much all these drugs, including SSRIs. That’s not the problem – the problem is how misinformed people are about them and how recklessly these drugs are used is terms of cost/benefit ratio and long-term use.
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Thank you so much for sharing your story — the more info out there the better!
I actually had a pretty different experience with klonopin and ativan. Basically, I have severe anxiety and depression — at one point it was so bad I had catatonia (the treatment for which is IV Ativan). I went on and off klonopin them for months or years at a time at time at a low/moderate doses and never had any withdrawal problems (until recently).
Recently I was backsliding with my anxiety so I restarted klonopin. Now normally I start off with a high dose to bring the anxiety down and then the dose naturally gets lower as I get better — since too much makes me sleepy it always seemed to have a build it anti-addition element to it (unless people want to be zonked out). the better I get, the smaller of a dose want (so I don’t get sleepy). However, This time the dose is escalating.
Ideally I want to live without these drugs. I am active, take my other meds, and have just started mindfulness — hopefully that will help.
I actually overcame a major phobia of flying with exposure therapy, though I did it by using smaller and small doses of ativan each time I flew so it was a drug + therapy process. How can I start in on generalized anxiety, especially without meds — it seem more complicated than kicking a phobia? Any tips would be MUCH appreciated!!!
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The more times you go on and off a benzo you “kindle” your nervous system. Each subsequent withdrawal can be worse than the one prior. Some people get a “free pass” with the benzos where they can get off one or a few times unscathed, which leads them to be utterly confused when they try again to come off, expecting to be fine as they were on discontinuing it previously, and find themselves suffering a hell they never knew existed when they do finally get dependence and withdrawal. Your escalating dose sounds like tolerance is developing quickly.
More on kindling: http://en.wikipedia.org/wiki/Kindling_(sedative-hypnotic_withdrawal)
You can read more about tolerance (and the benzos in general) here: http://www.benzo.org.uk/manual
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Unfortunately this is where I find myself, kindled! After short on/off use over yrs I managed to escape unscathed but now after only 3 wks use I am now in the midst of the a withdrawal that has shaken me to my core. It’s nothing short of hell really! And at 17 wks off I’m still crawling through my day’s.
Don’t play Russian Roulette with these drug’s cause you might just get shot!
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Have you tried relaxation techniques, yoga, meditation, Autogenes Training or simply a lot o physical activity? For me the last one was the most effective and I had really bad anxiety and panic attacks (which were not helped by the drugs – for instance Prozac made me completely panicked for no reason, similarly to Zyprexa withdrawal – I believe now that being started on these drugs for minor problems only made everything worse). Also it may be helpful to realise what situations/thoughts bring the fear about and target that specifically. It may be that you need a whole lifestyle change or at least an “attitude change” (I know, easier said than done). In contrast to what psychiatry claims anxiety is rarely a problem without a specific cause – living under chronic stress is usually the problem.
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I’d go with the relaxation/yoga/meditation. Then a diary to keep track of your moods and what effect these interventions have. And then I’d find a counselor who does not advise drugs.
I personally would not advice introvenous drugs for catatonia. I’d find a good friend who would sit with me, for hours if necersary, until the fear subsided – and then talk over what caused it.
Good luck.
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I deeply appreciate the discussion here. It’s true that black and white doesn’t serve us. These drugs, as with many others, are incredibly powerful. They knocked me on my arse which, when I was deep in the territory of insomnia, I wanted. Still, my concern about lack of knowledge about what happens to the brain/body with any kind of prolonged use is deep. And the slide into prolonged use can happen so easily. This is my gravest concern. Despair leading to use, leading to prolonged use and then the sudden stun of dependency.
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Some people also prescribe so-called “anti-psychotics/mood stabilisers” for insomia – I was prescribed Seroquel for sleep. It’s as far off label as one can get and very dangerous. In fact many psych drugs are sedatives or even anesthetics and prescribing them for sleep is very dangerous.
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bottom line, i think, is to call a spade a spade. acknowledge that all the mind drugs are drugs, no better or worse than street drugs. never call them medications. never think of them as cures. be honest that if you take them it is because you want to be numbed, be knocked out, to forget… and that it’s totally random that one group is legal and one group is not. i’ve always believed in the power of every human mind to be where it needs to be. and if you’re worn out from training your mind you might turn to drugs. but be honest about it- acknowledge that you’re looking for that buzz, that high- but you’ll never be free or “cured” til you train your mind to be the healthy, capable organ it absolutely can be.
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We should be doing research on how to ‘hack’ our brains, not find ‘magic bullets’ for our unpleasant emotions
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exactly, madmom. well said. most of the people in the world are so misguided- they (led astray by we-all-know-who) think such a magic bullet exists for this- and it does not and it never will.
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Great point.
There were times when doctors were prescribing morphine or alcohol for anxiety etc. Now it’s not legal but we have new and probably much more dangerous drugs.
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To know that these drugs are dangerous and addictive one dose is enough. I took them once on my own volition and knew immediately that I should never do that again – benzos made me really high. But of course that did not stop psychiatrists forcing them on me and I guess if I didn’t escape their hands I’d be one of those “abusing benzos”.
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I am with you 100 percent on this one. I was prescribed ativan and then klonopin for 3 years for generalized anxiety disorder. It almost ruined my life. It made me angry, forgetful, depressed, and most of all, more anxious! I became highly addicted, and it severely messed up my brain. I began running out early, thinking taking more would trump the severe anxiety I had obtained from taking them. My doctor cut me cold turkey, 8mg klonopin per day. It was hell, the worst experience of my life! It took me a solid two years to recover and nearly cost me my family. I honestly thought there was just something wrong with me until I began doing research, reading Ashton’s work (Ashton manual). People defend them only to justify their continued use believing that they have something wrong with them, when the drug just causes MORE anxiety in the long run! There should be a limit to the time this drug can be prescribed!! I have been going to NA groups for 3 years now and have met many people afflicted by benzos, everyone I’ve spoken with says the withdrawal is much worse than Oxycodone withdrawal mainly because of the length of time a person suffers. You’re doing a great job promoting awareness, more people need to be aware of the effects of this drug!
Oh, and I noticed your friend was using “special K” and you had reffered to it as klonopin. Special K is ‘ketamine’ on the street and it a powerful anesthetic. Very addictive! My wife is a veterinarian, a few places she has worked at have been robbed for that stuff! Its very dangerous.
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Hi Melissa,
I’ve been strugling with severe insomnia since May 14 after alot of health related stress. I was put on Seroquel 300mg which I stopped in 3 months. After that I was getting 3-2 broken hrs of sleep, and eventually I started taking Trazodone, which is not working very well. I went to a sleep slpecialist in Florida who told me to take 1mg Ativan assuring me that “it’s completely safe” and that I would get off it easily and “such a small dose is not addictive”. I should say that I tried it severeal times and it does help me to sleep, but I don’t take it more than 2xweek. Even doing so I worry about addiction and tolerance. I don’t want to take any meds for sleep, but I just don’t know how to restore my natural sleep? I tried everything – naturapath, accupuncture, supplements, etc. Tryptophan put me to sleep for an hour or so. But I am absolutley lost hope to sleep naturally. I wonder how did you regain your sleep after stopping benzo? I would appreciate any advice and thak you so much!
Natasha
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You’re comparatively lucky, Melissa, that the neurological damage from the benzos didn’t go on after stopping them. There is a sizable population of people who suffer for YEARS after the last dose. Not only did I suffer while on the benzos and tapering (I did make a mistake and cold turkeyed .5 mg. of Ativan. I was taking 1 mg. Ativan periodically and didn’t realize I’d built up a dependence, a terrible thing to do), I was switched to the infamous Klonopin. I didn’t know any better. I would have chosen Valium, a milder drug that has a long half-life. Both A and K are horrid. I have been in hell for almost 4 years after the last dose. Though symptoms are slowly getting better, the operative word here is SLOWLY.
I’m surprised that doctors won’t recognize this as a huge medical disaster. People who take these drugs say they need them because they’re “anxious.” Well, the reason why anxiety persists (and WORSENS) is because the drugs conveniently hijack the GABA, those important neurotransmitters that are calming. In rushes the glutamate. So when a person becomes dependent on the drug and has to take more, it is because of the decreasing GABA and the increasing glutamate, the excitatory neurotransmitters.
Yet some people get off these drugs easily THE FIRST TIME. No one knows why. Others are left with debilitating symptoms, not knowing why, with numerous trips to the ER or hospital.
Something has GOT to be done about these drugs. I can see them for triage purposes, but not for long-term (meaning over a few days) use. You should not even take them for three weeks. Some people are that sensitive. I knew someone who took Ativan for 19 days, and she spent more than a year in recovery.
Will we ever reach the doctors? I myself don’t say much about my plight to doctors. They look at me as if I’m on another planet. It’s useless. I just suffer in silence, but my poor family has taken quite a hit. The effects of this will be with them forever.
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I can certainly relate to you, drt. I am suffering terribly and am 26 months off of Klonopin. I keep wondering when will all this end?
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Thank you for your article, Melissa. I was on Klonopin for 7 years and it took me 5 1/2 to come off of it. I am now over 2 years off and still have major GI symptoms, depression and anxiety, sleep issues, weight loss (I’ve lost about 20 lbs. since my last dose over 2 years ago) and am disabled. I have been unable to bath consistently since 2009 due to the tremendous weakness (mostly in my arms) caused by Klonopin, so I am on SS Disability. I wish I had never heard of this drug (it was given to me by a neurologist as a muscle relaxant). For many people, protracted benzo withdrawal is horrific:
https://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome
At any rate, thanks again for the article.
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