S-O-S Best of the Best (BoB) is a collection of bloggers who come together once a month to write on one topic pertaining to “invisible” special needs, including ADHD, autism, anxiety, sensory processing disorder, and mental illness. I was asked to contribute a post for this month’s topic on the use of medications. The following excerpt from my new book, Blazing My Trail: Living and Thriving with Autism, discusses my experience of taking Lorazepam, a benzodiazepine, and the healing I’ve found since withdrawing from the medication.
My Experience with Lorazepam
“The biggest drug-addiction problem in the world doesn’t involve heroin, cocaine, or marijuana. In fact, it doesn’t involve an illegal drug at all. The world’s biggest drug-addiction problem is posed by a group of drugs, the benzodiazepines, which are widely prescribed by doctors and taken by countless millions of perfectly ordinary people around the world.” — Vernon Coleman
In February of 2005, to treat an increase in my level of anxiety, my primary care doctor prescribed a medication called Lorazepam. Little did I know that taking this drug would send me on a years-long journey of coping with ever-increasing depression, fear, loss of functioning, and social isolation.
Fortunately, in 2010, I changed course and began walking a new road. I engaged in the process of learning about how the medication had affected my life, and I went through the ordeal of weaning off it. As a result, my high level of functioning, my independence, and my zest for life have all returned.
Medication Withdrawal and Other Delights
From early 2005 until early 2009, I took one 0.5 mg tablet of Lorazepam upon awakening in the morning and another before going to sleep at night. After I had been on the medication for four years, another doctor increased the dosage to 0.5 mg in the morning and 1.0 mg at night. By early 2010, I was taking 2.0 mg per day. A third doctor also put me on Zoloft (an SSRI) and Topamax (for migraine prevention), in addition to Lorazepam and Amitriptyline (a tricyclic antidepressant).
By the spring of 2010, I had begun to realize that the medications, far from helping me, were making it increasingly difficult to manage my life. I was crying almost every day and I was nearly housebound. So I began the process of weaning off all of them — without medical supervision. My primary care doctor had fired me from her practice after I asked for accommodations for my disability, and it took me over a month to find another doctor who would accommodate me and guide me through the weaning process.
Meanwhile, I was on my own.
Tapering off Zoloft, Topamax, and Amitriptyline posed no problem whatsoever. Quitting Lorazepam, however, was another story. After attempting to withdraw from Lorazepam by decreasing my dosage by 0.5 mg per week, I suffered an acute reaction. I began to
have a tremendous amount of anxiety, and my sleep worsened. After I stopped taking the medication altogether, I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened. I was in so much physical pain that it was almost unbearable. I felt as though my body and mind were coming apart. I found myself pacing up and down the floors of our house saying, “Misery, misery, misery.” Without a physician to consult, I couldn’t understand why the withdrawal was having this impact.
With nowhere else to turn, I went online and looked up information on how to taper off Lorazepam without pushing myself to the edge of sanity. When I did, I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium, and it’s highly addictive. In fact, in 1975, the U.S. Department of Justice demanded that benzodiazepines be classified as schedule IV drugs under the Controlled Substances Act.
And yet, this medication had been prescribed for me by three different doctors — even after I had told them, in no uncertain terms, that I absolutely did not want to take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?
As I soon found out, I was not alone in suffering acute withdrawal symptoms. According to Professor Malcolm Lader, member of the UK Committee on the Review of Medicines, Lorazepam is a particularly difficult drug to withdraw from. “When somebody comes into my office and says that they’ve been trying to stop their Lorazepam,” he said, “my heart sinks, because I know I shall have twice as much of a problem as getting them off, say, Valium. The symptoms are more severe, they’re more persistent, more bizarre, and people are much more distressed by them.” (Ashton, “A Problem”)
In my online travels, I found a support site for people seeking to withdraw safely from benzodiazepines — and I learned that, when done properly, the process takes six to 12 months. So, in early May of 2010, I put myself on a stabilization dose of 1.5 mg per day, and I found myself able to sleep and to tolerate being in my body again. After three weeks, I began tapering very slowly, cutting my dosage by very small decrements, until I finally finished my taper, under the care of a new primary care doctor, eight months later.
Suffice it to say that, even over the course of a slow taper, the withdrawal process was brutal. Every time I made a cut in my dosage, I experienced extreme amounts of muscle pain, insomnia, anxiety, depression, and exhaustion. I was determined to rid Lorazepam from my body, though, and by the grace of God, I have.
But the havoc this medication wrought over the years I took it is, unfortunately, an all-too-common effect of benzodiazepines.
Daily Interdose Withdrawals
Lorazepam is a short half-life benzodiazepine. On average, the dose reaches its peak blood levels in about seven to eight hours. As I came to understand how quickly the concentration of the drug in my bloodstream was falling each day, my experience of the previous four years started to come into focus. Because I had been taking the medication only in the morning and in the evening, I had been going through interdose withdrawals on a daily basis, with all the same symptoms that would attend my eight-month taper.
That’s right: I had been having withdrawal symptoms every single day for four years. No one had ever warned me about how the medication worked, so I couldn’t figure out why I was on such a physical and emotional rollercoaster ride. Nothing in my life seemed to account for it, and the only response from my prescribing doctors was to increase my dosage.
These increases did not work. In addition to the impact of falling blood concentrations, daily withdrawal symptoms occur because of the tolerance that the body develops, very quickly, to the drug itself. As Dr. C. Heather Ashton writes in Benzodiazepines: How They Work and How to Withdraw, these drugs “lose much of their efficacy because of the development of tolerance. When tolerance develops, ‘withdrawal’ symptoms can appear even though the user continues to take the drug.” (Chapter II)
Because they quickly become ineffective and trigger daily withdrawal symptoms, benzodiazepines cause a host of problems, many of which they were intended to manage. In early 2009, after four years of benzodiazepine use, I exhibited difficulties common to benzodiazepine users. I was crying on a regular basis. I was falling into a depression unlike anything I had ever experienced. My anxiety was nearly paralyzing. And I had become almost housebound. The outside world felt overwhelming, and going out triggered both fear and exhaustion.
All of these symptoms amount to a textbook case of the impact of benzodiazepines. In her research, Dr. Ashton determined that people who use these drugs become ill with a number of psychiatric conditions. “Many patients,” she writes, “find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use.” She adds that long-term benzodiazepine use can cause depression in people with no history of it and can aggravate depression in people already suffering from it. (ibid, Chapter I)
Heightened Sensory Sensitivity
As a person with autism, I found that all of the symptoms that attend benzodiazepine use were exacerbated by the impact of interdose withdrawals on my sensory functioning.
By early 2009, I was more sensory sensitive than I had ever been in my life. Sometimes, my skin felt like tissue paper; at other times, loud noises were enough to send me into physical pain that took me days to recover from. Light seemed very bright, and I began wearing sunglasses, even on winter days. I became overwhelmed by this sudden severe spike in sensitivity, and every foray into the outside world took all the courage and energy I could muster. My level of functioning decreased significantly. Most days, I just stayed home. I couldn’t figure out what was happening.
Then, I read Dr. Ashton’s findings on benzodiazepine withdrawal and sensory sensitivity. She notes that “a characteristic feature of benzodiazepine withdrawal is a heightened sensitivity to all sensations — hearing, sight, touch, taste and smell. When extreme, these sensations can be disturbing.” She describes one woman needing to stop all the clocks in her house because their ticking seemed unbearably loud. Others have had to wear dark glasses because ordinary light seemed “dazzlingly bright.” (ibid, Chapter III) I’d finally found an answer to the question of why my sensory sensitivities had increased so dramatically in a relatively short period of time: the daily interdose withdrawals were sending my already acutely sensitive system into overdrive.
After four years of benzodiazepine use, I could barely socialize at all. I felt very isolated and I suffered from severe levels of stress that were lowering my levels of functioning. As I learned about the havoc that these drugs wreak, I considered myself lucky to be tapering off them before they stole any more years from my life.
Recovering from Benzodiazepines
The good news is that my functioning and my quality of life have improved dramatically since withdrawing from Lorazepam. Just halfway through a difficult taper, I found my mind becoming clearer and my mood lifting. I felt more physically and emotionally resilient than I had in years.
As my taper progressed, I began to feel alive again. I still had my sensory-sensitive “I don’t want to go anywhere” days, but even on those days, I forced myself to go out for a walk, just to keep intact my connection to the world. In so doing, to my great surprise, I found my connection to the world not limited to human beings, but to all of creation. I began to walk and appreciate the trees, the colors, the breeze blowing — even the humid weather of a New England summer. I carried my camera with me everywhere and I took pictures that enabled me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world became a fascinating place. Ultimately, I entered three of my best photos in a local contest, won second prize, and had the pleasure of seeing my work displayed in town with that of other photographers.
Since I’ve withdrawn from the medication entirely, the positive effects have only increased, and my sensory sensitivities have quieted down appreciably. I go out every day, in any weather, even in winter. I’ve made new friends and rekindled relationships with old ones. The depression and agoraphobia are both entirely gone, and my high levels of functioning and independence have returned.
My experience is not unique. In 1991, Karl Rickels, a researcher at the University of Pennsylvania School of Medicine, reported that patients who had gotten off benzodiazepines were doing “significantly” better than those who had failed to do so. A few years later, he found that after long-term users withdrew from benzodiazepines, they “became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.” (Whitaker, 136-137)
As for Dr. Ashton, she found that agoraphobia in her patients disappeared within a year of withdrawal, even in patients who had been housebound. Furthermore, most users experienced a dramatic increase in quality of life after withdrawal:
“Clinical experience shows that most long-term benzodiazepine users actually feel better after coming off the drugs. Many users have remarked that it was not until they came off their drugs that they realised they had been operating below par for all the years they had been taking them. It was as though a net curtain or veil had been lifted from their eyes: slowly, sometimes suddenly, colours became brighter, grass greener, mind clearer, fears vanished, mood lifted, and physical vigour returned.” (ibid, Chapter II)
When I was on benzodiazepines, my emotions were scattered, my sensory sensitivities were through the roof, and I found it difficult to think clearly. Since I’ve stopped taking them, my emotions have become much more moderate, positive, and under my control; my sensory sensitivities have become much more manageable; my thoughts have become sharper by the day; and, best of all, my passion for living has returned.
References
Ashton, C. Heather. “Benzodiazepines: How They Work and How to Withdraw.” benzo.org.uk. August 2002, revised. Accessed 21 June 2011. http://www.benzo.org.uk/manual/
—-. “A Problem with Lorazepam?” benzo.org.uk. 1988. Accessed 21 June 2011. http://www.benzo.org.uk/ashloraz.htm
Coleman, Vernon. Life without Tranquillisers. Large print ed. Bath, England: Chivers, 1990.
Whitaker, Robert. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY: Crown Publishers, 2010.
© 2011 by Rachel Cohen-Rottenberg
Rachel, what an incredible, yet painful journey. Hopefully this will prevent someone from heading down the same path. Thank you for so openly sharing your experience.
Thank you for your kind words, Danette. I hope that my experience is of value to others.
I have to echo that I had similar issues with various benzo’s in my life. I was not sure if the side-effects/problems were increased because of my autism or not. I now put down that I am allergic to Benzodiazepines to make sure that they don’t get accidentally introduced.
Thank you for spreading the word on this.
Stephen, I do the same thing. I wear a Medic Alert necklace that says, “See Wallet Card,” and on a business-sized card in my wallet, I’ve written down under “Do Not Administer” sulfa drugs, benzos, and Z drugs. I’ve also specified in my advance directive that I’m not to be given benzos for any reason, and my medical chart has the same info.
Rachel, thank you so much for posting this. My adult son had been on lorazepam for a similar number of years and dose level as you had been. He tapered off this year and was finished with lorazepam Oct 11. (about a month now!) He is still not “settled” but I am really glad that he weaned himself off. No doctor had been willing to actually help him to manage the tapering process. They said they would, but never made a plan with him. Now, more than ever, I’m thinking that we (patients) MUST do more of our own research into whatever conditions we are bothered with. Sheesh!
Congratulations to your son for tapering off Lorazepam! It’s a very difficult thing to do. Most people switch over to Valium, which has a much longer half-life, and taper from there. I decided to not to, as the idea of introducing a whole other benzo into my system did not appeal to me. But it’s very tough, and I’m always glad to hear of another ex-Loraz user making it through.
And yes, we patients must definitely do our homework! I educated my doctor on this whole process.
Dear Rachel: What a beautiful, sad story. I’ve always been leery of taking medication for psychological reasons. I thought I was depressed because I was lonely and what was the use in taking drugs? I’d still be lonely. However, two years ago, after my parents died and the aunt who “rescued” me after college also passed away, I was so overwhelmed by depression and anxiety that I finally sought psychotherapeutic tratment. That’s how I came to be diagnosed with Asperger’s. The first medication I was prescribed was an=antidepressent (Wellbutrin). However, the dosage had to be dialied down several times because I becoming manic. Now I take a very minimal dose of Wellbutrin, but I also take the generic form of Klonopin, which I believe is a benzodiazepine. I had to ask for it; my anxiety level was making me completely dysfunctional. I was actually getting into auto accidents -once I even got arrested over a” road rage” incident– because I was freaking out all the time. The Klonopin does work very well in calming me down. I take o.5 mgr. per day, and I’m tempted to increase the dose, but I won’t. I’m frightened of being addicted, but on the other hand, I just can’t handle the anxiety at this time of my life.I’m all alone in the world now and I have no one to take care of me, o if I get into a situation where I cannot control my emptions, it could be diaster.
Charli, I’m so sorry for all of your losses. ((((hugs))))
Like you, I tried Wellbutrin, and it felt like I was on speed. That’s the worst feeling in the world for me. Ugh. I stopped taking it after two days.
I think that medication, used judiciously, can be very helpful. I’ve always found the old tricyclic anti-depressants to be very effective for anxiety and insomnia, but it’s not the same for everyone. I took Amitriptyline for awhile, and then Trazadone when I had some rebound anxiety after my Lorazepam taper. A lot of people can’t tolerate the tricyclics (I know one guy who said they worked real well until he got out of bed and fell down) but they seem to work very well with my physiology, and they’re non-addictive. Tapering off them was not difficult for me.
That’s really the thing to keep in mind with any mind-altering medications–that, and everyone reacts differently. I’m also on Wellbutrin, and it’s been a godsend for me. I tend to cringe when I see articles talking about negative experiences, because it feeds into a culture of ‘drugs are always bad’, when many of those same drugs do positive things for other people.
One thing I would suggest is to deal with a psychiatrist rather than a GP for these things, if possible. This is too important to leave in the hands of a non-specialist. (And the new health care act means that it’s more likely to be covered under your insurance plan than in the past–I have no more deductable!)
Jayn, I agree that medications work very differently for different people. I also know that under some circumstances, benzos are appropriate, especially for people with seizure disorders. The problem is that they are being prescribed for constant use and not for emergency use, even though the label says that they should not be taken for more than 2 weeks maximum. Doctors prescribe them for far longer than that, pharmacists fill the prescriptions, and pharmaceutical companies reap the profits.
In my experience, I have not found that psychiatrists are any more responsible about benzo prescriptions than GPs. The last person who prescribed benzos for me was a psychiatrist who not only upped my dosage and put me on other medications to counteract what he apparently did not realize the benzos were doing, but who at one point, after I said that the only way I could get on an airplane was if I knew I’d sleep the entire way, offered to prescribe me enough Lorazepam to render me unconscious. And yes, I was joking, and no, he was not. Even though the dangers of benzos have been well-known for some time, they are still psychiatry’s “dirty little secret” and are still the main drug of choice for anxiety when other non-addictive medications are available.
These days, I feel far safer in the hands of my GP, who treads very carefully with medications, than I did in the hands of the psychiatrist, who didn’t. When she doesn’t know enough about a particular medication to make an informed decision, my GP tells me. I think the most important thing is to interview potential doctors very carefully regarding their stance toward medications, what they know, and on what basis they prescribe. I’m not against medication. I’m for judicious use of medication. At least in the US, too many psychiatrists try to solve problems with medication that could be solved with supportive, in-depth therapy. It becomes an attempt at a quick cure-all. There are some conditions for which medications are required, for sure, and there are times that medications are an excellent adjunct to therapy (I’ve experienced that myself), but the pendulum has swung dangerously in the direction of trying to solve everything with a pill. Caveat emptor.
I’m currently tapering off a drug that I always felt my diagnosing doc (a GP) was too quick to add. I don’t think it’s doing anything for me, so why take it? Fortunately it’s not a bad one to withdraw from. It’s probably a bit of a toss-up, depending on how cautious your prescribing doctor is. It sounds like yours is aware of her limits and is unwilling to risk your health by pushing them.
I also can’t help but wonder how much of this is influenced by profit for the doctors–not for prescribing drugs, but for getting you in and out of their office faster. I still can’t understand why people think that healthcare and free market capitalism work well together ><
Uh, I got a situation here, I have a couple of cavities I need to get taken care of before they start to cause pain. (They were caused by wearing a bridge all the time, and food particles got stuck under the bridge. And I don’t brush all that often.) Anyway, I finally went to see a Dentist a couple of days ago, and they wanted to do a root canal on the worst one, and a filling on the second one.
I tried to explain how I’m hypersensitive to everything, bright lights, loud noises, strong smells, etc. (without mentioning Asperger’s as the reason). I told him that the thing that bothered me most was the sound and feel of the drill, that it practically drove me up the wall to hear/feel such, and would prefer to be knocked out.
Nope, they don’t do that, at my age the risk of heart failure was too great, so they only offer novocaine for pain, and nitrous oxygen and Valium or Halcion for psychological relaxation. And their price for these is $200, (generously discounted from $400!) Hmmmm. I nixed the idea of doing a root canal, (way too much drilling), when they explained that they could just extract that tooth and replace it by adding a tooth to my bridge. Much better solution for me, but I wondered about the $200 cost for sedation. I went in the next day, and inquired of the person who tabulates the cost of various procedures just what I would be getting for that $200. She answered that she would provide me with a script for halcion, which I would then take to a pharmacy.
I had never taken that before, to my knowledge, so I looked it up on Google, just another benzodiazapine, just another sleep aid, but with a shorter half-life. So I wondered why I couldn’t just take a Lorazapam or two, or an Amityptaline capsule, which I already have? I went to the Pharmacist at the VA Clinic, showed him the “estimate” from the Dentist’s office, and asked him whether Lorazapam or Amitryptaline would serve the same purpose as the Halcion? He said that they would, but if that wasn’t agreed to by the Dentist, he could prove me a tablet of Halcion for only $8, the standard charge by the VA for a month’s supply of anything ordered by a Doctor.
So on Thursday, I called the person at the Dentist’s office again, told her that the 60 yr old Pharmacist at the VA had told me that Lorazapam could serve the same purpose, and if the Dentist didn’t think that was good enough, then he would fill the Rx for Halcion for me at the VA. She said she’d have to ask the Doctor, but would get back to me. I told her I was going to take a nap, but she could call me Friday afternoon, (on Veteran’s Day) to let me know. I wondered if they were going to tell a Veteran on Veteran’s Day that he couldn’t make use of his Veteran’s benefits of VA-supplied drugs. The word from the Dentist was that I could just take two Lorazapam instead. I’ve never taken more than one before, in fact, I often cut them in half. I dunno if I should take two.
I guess I’ll still pay $80 for nitrous oxygen, but I’ve saved myself $120 by not paying for a script for Valium or Halcion from them! Psssshhh! $120 for one lousy pill, I don’t think so!
Still not looking forward to 15 December…
$120 for a pill? Wow.
Good luck on the 15th! I hope it all goes well.
I think they were trying to pad their profit margin. They don’t know that I’m notoriously cheap.
I always find discussions about benzos interesting as (1) I’m a doctor, and (2) I had a severe depressive reaction to temazepam after being prescribed it to help with shift work insomnia (actually probably a depressive symptom) some years ago.
One thing to note – always look up the generic name of anything you’re prescribed. It makes it much easier if you know the category of drug you’re taking. All benzodiazepine drug names end in -pam or occasionally -lam (diazepam, lorazepam, clozapam, alprazolam, midazolam and so on). The whole category is highly addictive.
In the UK, prescribing any of these drugs for more than two weeks is likely to earn you a ‘please explain’ letter from the primary care trust (regional government agency), and/or be reported by the dispensing pharmacist. There was a bit of a fad for zolpidem/zopiclone as it was marketed as having no physical addictive properties, but consequently it worked poorly and psychological addiction can be just as problematic. Since I’ve moved to Australia, I’ve found the benzo prescribing rates here terrifying.
Most doctors don’t give plans for weaning off drugs as everyone responds differently. Like smoking, some people seem to be able to just stop, some can taper, some need patches or other aids. The only thing to be said is ‘taper the drug at a speed you can cope with’. I had spectacular withdrawal symptoms from venlafaxine, which lasted for nearly two years after I took the last tablet, but because I knew they were withdrawal symptoms, I was able to handle them and not panic.
I think like most drugs, benzos can be useful in specific circumstances, with the fully informed consent of the patient who will be taking them. It distresses me how many people come to the surgery or emergency department demanding them – there is a myth that they help back pain (not confirmed by any decent study) and I’m constantly stopping my juniors from prescribing them. Depending on personality, underlying condition and drug, benzo addiction can happen really fast.
I also have the dental drill thing – I need to get a tooth removed, which will involve drilling into the bone and splitting the root into four pieces. No dentist I’ve spoken to has ever grasped the issues I have with the drill; despite explaining that they can inject as much local as they like and it won’t bother me, all they hear is ‘scared of needles’.
But I envy you one thing – I’ve been quoted A$5500 (without anaesthetic) for the treatment.
Wow! What a sad, telling and important story you have shared here. I am glad your passion for living has returned and pray that your words here help others who are int he situation you were in better understand it while making others pause before falling down a slippery slope of meds like those you were on.
I am sitting here in the UMass student center using the public computers.
I am 40 years old and homeless. I was an artist once, at least I thought I was.
I am about the walk to the bathroom and take my Colonopin, 2 mg. If I don’t my heart will be in my throat all day, pounding out an uneven and painful rhythm, interrupted only by bouts of sobbing and wondering how the hell I will make it through the day. The shelters were all full last night, slept in the car, it was 20 degrees last night and my exhaust is falling off.
My “Wife” (ex but not divorced after 4 year, insert long story here) is convinced I have Asperger’s, my son does. I read the criteria and if I used my highlighter to outline the applicable information it would go dry.
I wish I could figure out how to live on my own but I fail every time.
The reflection in the mirror has no meaning to me, I often brush my teeth beside the mirror so I don’t have to look through that portal. Sometimes I do, helps when practicing expressions. The correct expressions are important when you need to get people to do what you want them to do.
I have been in the hospital twice in 5 weeks. They were all kind, very caring… They run to put out the fire with full hearts and douse the flames with drugs. A week long bucket brigade that ends with my discharge and ticket back to the streets of Northampton.
I want to die but I am not allowed to. How is it that a man who loves his children so very very much can resent them for keeping him alive?
I need a coffee and my morning meds, bye.
For all those who would like to provide emotional support to Steven during this difficult time, please see my recent blog post: http://www.journeyswithautism.com/2011/12/24/please-help-an-aspie-in-difficulty/
Hi. I was wondering if you could give more details on how you weaned off lorazepam. I want to this as well and have made it to .5 mg twice a day, from 1 mg twice a day. But I’ve had difficulty going any further. Did you split it into three doses? Did you lower both night and morning doses at the same rate?
I really want to get off this drug and unfortunately my psychiatrist isn’t being very helpful.
thanks.
Hi Grant,
I will email you with the details.
You’ve already done such a great job of it — you’re halfway there! I’m happy to help support you the rest of the way.
Blessings,
Rachel