Administrators
magrita
My benzo story started with a panic attack. I was a very active person with a busy social life who loved socialising. I had stopped drinking but it never stopped me having fun. Then out of the blue these panics started and I thought I was about to die. I went to my GP and was given 60 diazepam 2mg pills. She said take one, twice a day. That was 26 years ago and this doctor had seen my battle with booze. I had no idea they were addictive. We didn’t have a computer then we just trusted our GPs.
Anyhow, I started taking the diazepam. I took one pill a day to start with. My panic attacks stopped and I got on with life. I was taking a 2mg pill per day.Over the years I did have bouts of depression and other complaints. Things I couldn’t quite put my finger on I know now it was the diazepam.
About 7 years ago the panic attacks started again but far worse than before, awful anxiety, I could not function. The GP increased my dose and it went up and up till it got to 20 mgs. I started getting very depressed, crying all day. The GP added antidepressants to the mix. I was a complete mess and I lost the will to live. I became housebound I could not wash myself or dress myself. I was so sick my husband had to take care of me. I was scared of the phone. I used to get electric shocks when the phone rang or the doorbell and I could not open my front door(agoraphobia). I was in fear of everything. I had muscle pains and severe stomach problems, along with every symptom in the book. Some were extremely scary. I had tests done, endoscopies, x-rays, bloods; all came back negative.
On my next visit to see the doctor I asked her if the medication could be the problem. My GP laughed and kept telling me it was all in my head. I was too weak to argue. What was worse for me was when my family and friends told me to pull myself together. That’s when I convinced myself it was in my head. I dragged myself onto the computer one day and did a search on diazepam. How I managed it I do not know. I was so ill, and wanted to die.
I found several benzo support forums and could not believe how my story was so common. People like me with the same complaints! It was sad but also a huge RELIEF to me. I wasn’t going mad. It wasn’t all in my head. They told me on the forums it gets better. I didn’t believe them but I did what they suggested me to do. I started my taper. I did 10% cuts until I got to 6mgs. I then did 5% cuts. It was hard cutting the pills, I ended up with powder most of the time.
Anyhow I managed it and here I am 20 months free 99% healed. I noticed big improvements after the first year (we are all different). I have seen some recover sooner and some later, but what is for certain is WE ALL DO RECOVER. I NEVER thought I would make it. We all make it in the end, it's just time. My only regret is that i didn't get off the benzos sooner. I have lost 5 years of my life.I am trying to make up for it now. I am out most of the time. I was also pretty cheap for a while but today it is costing my poor dear loyal husband.
I then joined another forum who got me through this last 6 months. I made some amazing friendships and got to know some of the bravest people I have ever met. Now I have been welcomed at Benzobuddies and am meeting more brave people.
Thank you all, you amazing mods, admins, volunteers and technicians for giving us this life saving forum.
2012-03-27
pianogirl
My story starts with a trip to the ER for what were some dizzy, lightheaded symptoms I was having. I remember the day clearly, I had been painting our bedroom and although I had had episodes like this before, this time it was much worse. All the tests were normal and my doctor told me it was a middle ear issue and sent me to an ENT. Unfortunately the doctor was very busy and spent little time with me. He gave me a prescription for Ativan and said that the condition I had would just go away. After 6 weeks of taking Ativan I was dependent but didn’t know it, in fact I didn’t even know what a benzo was. I was told to stop it, since it was a very low dose, for a vestibular wellness test, and that’s when I became very ill. Little did I know that I was going through withdrawal. My doctor said it wasn’t the Ativan because I had stopped it 2 weeks before. All the many medical tests came back normal. I was indeed anxious at this point and having so many scary symptoms, rather than keep trying the many sample meds my doctor gave me, which also made me ill, I decided to see a psychiatrist.
I was put on clonazepam and many antidepressants and other medications that my sensitive system could not tolerate. I began to feel sicker still and went for more tests and procedures. Around this time I started to research my medications, and asked my doctor many times about the safety of taking the clonazepam long term. My psychiatrist was on the right route, he just took a wrong turn. He had my hormones tested as well as my thyroid because he didn’t see a psychological reason for the anxiety and other symptoms. After changing doctors once again, both my new doctor and I decided the medications were making me ill. I came across the Ashton Manual and we used it for a cross over to Valium since I was finding it difficult to taper from the clonazepam.
I found BenzoBuddies after I finished my taper and as with many here I so wish I had found it earlier. This has been the hardest thing I have ever done, but the most important. I am so much more proactive about my health and knowledgeable thanks to the people here at BenzoBuddies. They provided me a safe, kind and caring place to come whenever I needed encouragement or validation that what I felt was normal for withdrawal. This is a community of believers, believing that recovery will happen, that healing will occur. Never lose sight of the goal to be benzo free, every day is a step in the right direction. Now that I am healed, and happier than ever before, it is important for me to give back to this forum that provided me so much comfort and support.
2012-03-27
Senior Moderators
Betsy
I was prescribed Clobazam, together with Epilim, Tegretol, Lyrica and Lamictal in January 2006 for persistent partial seizures following neuro surgery to remove a large benign tumour from my brain. From that day on I entered into a world that removed a lot of the “old” me. I was changed. I felt strange and removed from life, sort of ghost like. Over time I began to feel very, very depressed and suffered mood swings. I began to get anxiety and adrenaline surges that prevented me from sleeping. I was constantly exhausted. Of course it was difficult for anyone to pinpoint where my problems stemmed from. I'd had an enormous life saving brain operation and all indications pointed to brain injury. I was grateful to be alive and I got on with life, and although it was a struggle, I managed. I did some amazing things too!
Then in April 2011 things changed, I began to suffer from panic attacks, huge adrenaline surges, weeping spells, and more. I was in a bad way and thought that I was having some kind of a break down. My neurologist prescribed 1mg of Ativan twice daily. This made me feel much worse. Thankfully I only took it for two days.. Finally, I asked the golden question! Could any of any of my medications could be making me sick? In answer he said, “Yes, they could”! It was agreed to immediately start reducing the clobazam. Then I got really sick... I had hallucinations, suicide ideation, paranoia, agoraphobia, crying fits, insomnia. I felt like a crazy person. Through my own desperate research I learnt of the word 'benzodiazipnes' and that was a turning point. Having found the Ashton Manual, I reinstated my clobazam, and crossed over to Valium. I have been tapering slowly since August 2011. Tapering has not been easy for me, I have been ill most of the time, but I am getting there now. I can see a glimmer of improvement coming here and there and I so look forward to the day when I can be free of Valium, and recovered.
2012-05-19
megan918
In 1999 I started having anxiety and panic attacks, accompanied by palpitations and skipped heartbeats. I became terrified that something was wrong with my heart. It turned out my heart was fine, but the panic attacks continued. I began therapy sessions with a psychiatrist who diagnosed me with panic disorder, social phobia, and depression. He prescribed Xanax and an antidepressant. My palpitations stopped immediately, and so did the anxiety and panic. Xanax was no less than a miracle for me at the time!
In 2002 my husband died very suddenly. My whole world was shattered, and I was put on an even higher dose of Xanax. This helped me to get through the next several years, as tolerance had not yet set in. But by 2007-2008 tolerance had reared its ugly head—I'd gained 50 pounds, had memory problems, was unable to paint (I'd been a successful professional artist), and more and more depressed. In 2009 I decided I had to quit Xanax. At the time I knew nothing about tapering, so I entered a 4 day cold-turkey hospital detox program. Afterward I suffered intense physical symptoms for three months. I Then had a health crisis unrelated to my withdrawal—an eye condition for which I had to "wait and see" if I went blind within 6 months! The stress was too much, and I was back on Xanax. Nothing bad happened—eyesight wise—but I was "hooked" again.
About six months ago, I completed a fast taper off Valium. My symptoms have been mostly mental this time but the worst physical symptoms now gone. I'm so grateful to BenzoBuddies for getting me through this—my hypochondria knew no bounds the first six months and I'd often imagine I had several major diseases in one day. It was such a comfort to come here read that others had experienced the same frightening and bizarre symptoms and come out the other side intact—even healed! I love BenzoBuddies!
2012-10-22
sunnyside
In January, 2010 I had Labyrinthitis that lasted for a week and I took a low dose of Ativan for anxiety that stemmed from the vertigo. After a week off the Ativan I experienced anxiety that was so intense, I returned to the doctor who refilled the Ativan. What followed was a 25-month downward spiral of my physical and emotional health. The main symptoms were dizziness, anxiety, panic attacks, tinnitus, nausea, insomnia, sensitivity to light and sound, headaches, muscle tension, weakness, hypoglycemia, hypo-tension, DP/DR, and, eventually, numbness in my feet and tingling in my extremities. All testing results were normal and I was repeatedly given prescriptions for Ativan and Klonopin for misdiagnoses of "it's only anxiety." In my heart I felt like it was way more than anxiety. I'd had anxiety before; I'd been under the care of a psychiatrist for years and my anxiety had been totally managed with CTB and low dose Imipramine. I'd taken my last drink of alcohol in 1995. This was very different. I had gone from being a happy person who worked full time and lived a "normal" life to a person who had to quit a job I loved. I was too ill to work because of the progression of symptoms that seemed to be increasing in number and worsening in intensity by the month. In the end I was agoraphobic/housebound, my relationships were stressed, I was consumed with fear. The physicians with whom I had worked professionally were distant, and my family questioned my sanity.
In February I read a journal I had been keeping over the months and thought I saw a pattern in my symptoms related to the Ativan dosage times. I went online and did a search for benzodiazepines and found the link to BenzoBuddies. Here I read the Ashton Manual and posts from the Buddies describing, basically the life I had been living for the previous two years. I made a conscious decision to eliminate benzos and saw a psychiatrist who, unfortunately, wasn't benzo-wise and advised a cold turkey. I was too sick to go for a 2nd opinion and just did it. I can say now, just over 7 months off, I'm not 100% healed, but I'm so much better, and a new physician has assured me that in time, healing will occur at 100%. The support here from Colin, the BB team, and the Buddies has been invaluable to me and my family.
2012-10-22
Moderators
alabamawerle
I was experiencing some difficuties while trying to get pregnant and was prescribed my first benzodiazepine. Opting for a more natural approach, I started using bio-identical natural progesterone. I had a completely paradoxical reaction: severe agitation and anxiety, which I was told was not possible. I now know that it is.. I was sent to see a "fertility psychiatrist" and because I had previously been on an antidepressant for a nerve (not nervous) problem, they insisted that the anxiety was not due to the progesterone but due to my stopping celexa the previous year (even though I completed a successful taper). They again prescribed celexa, but I did not respond the same way as I did the first time and I developed even worse anxiety. Because of this reaction, I was given a very liberal prescription, with many repeats, for lorazepam.
After months of feeling like I was going insane from severe agitation, I tapered off both drugs and stopped the progesterone. I felt great! I was however, smoking marijuana daily and had been for a few years. When I decided a few months later to try and conceive again, I thought it best to stop smoking marijuana. Within days I started to experience crippling stomach pains and anxiety. After consulting with many doctors and them not knowing why I was in such pain (I now know it was 'benzo belly') I was advised to reinstate the lorazepam to stop the stomach pain. In hindsight I realize that I was just having normal symptoms of post withdrawal from lorazepam that had been masked by my use of marijuana. Reinstating lorazepam is the only regret I have ever had in my life.
Eight months later, and after a multitude of tests, hospital stays, trips to the ER, a 40 pound weight loss, thousands of dollars spent on professional medical and holistic care, severe anxiety and depression, and a severe phobia of eating and malnutrition, I was finally checked into a mental health facility as it was concluded that ALL my problems were psychological. There, I was finally diagnosed with Superior Mesenteric Artery Syndrome due to severe weight loss, an anxiety disorder, depression and borderline psychotic. I was kept for the next 90 days and given 30 Electric Shock treatments when all other medications to treat my "condition" failed.
Again, in hindsight, I was not clinically depressed, nor did I have an anxiety disorder or psychosis. I was severely malnourished and in agony and over-drugged and thus depressed and stressed. I was also having what I now know to be inter-dose withdrawal effects from the lorazepam. How do I know this? Because once I was switched to a longer acting benzodiazepine (clonazepam) the anxiety stopped. And once I got down to a very low dose of clonazepam, my depression lifted.
I began my 20-month dry cut taper, 6 months after leaving the hospital. I had to taper from Olanzipine, Clonazepam, Zopiclone and Panataloc. I had an excellent therapist, learned CBT, had the support of a wonderful benzo-wise doctor and a loving husband. And even though I lost so much during the past three years, I have also gained so very much. I left no rock unturned. I learned valuable coping skills and was pushed to extremes, but I rose to the occasion and found that I was a lot more capable and stronger than I ever thought. I decided to take the opportunity to learn every lesson I could from this adventure and I am definitely leaving this experience without the baggage I entered with! As horrible as this has all been, in a strange way, because of benzo's I now have the life I always dreamed of.
2013-09-20
Juliea
In 1984, I was prescribed 14 Halcion tablets to treat jet lag related insomnia when traveling to Paris for my Honeymoon. I had never suffered from insomnia before in my life. After returning home, my insomnia did not resolve and this caused me a great deal of anxiety around bedtime.
I never forgot how well the Halcion helped me sleep. By the late 1980's, I finally saw a psychiatrist about my sleeping problem and asked my doctor for more Halcion. I was diagnosed with GAD and insomnia and rather than Halcion, the doctor prescribed what she felt was a "much better medicine", Xanax.
For the next 25 years, I continued to see the same psychiatrist who continued to prescribe me Xanax in increasing dosages for sleep. My dose would at times, escalate to as high as 6mg at bedtime. However, I would frequently taper back down to 3mg per night periodically, because I didn't want to become dependent on Xanax. However, I did not understand benzo dependency; I was dependent but didn't know it.
In 2010, I woke up one morning with the most crushing anxiety imaginable. It was so severe that I thought about checking myself into a psych hospital. The anxiety persisted for about 2 weeks. What I didn't realize at the time was that I was experiencing Xanax tolerance/relative withdrawal, because of one of my tapering down from 6mg to 3mg episodes. The anxiety finally resolved because I had reinstated back up to 6mg, yet I did not put 2+2 together at the time and realize the anxiety was caused by Xanax.
In May of 2012, I had some Xanax stolen. After the robbery I realized that I did not want to be taking a medication that someone felt the need to steal. Plus, I knew a person who had been forced cold turkey off of their Xanax during a hospital stay and had suffered greatly. I became determined to taper off.
I began my taper in July of 2012 at 3mg. I tapered directly from Xanax by dry cutting, using the cut and hold method. My taper lasted 9 months and was tough at times, but manageable. I completed my taper on April 25, 2013 and have done extremely well post taper.
I am here to give back to the community that helped me so much. Without the support of BenzoBuddies, I would have attempted to taper much faster (too fast), probably failed to complete the course and still would be on the Xanax. I want to give hope to long term, high dose, older, benzo users. We can also be benzo-free!
2013-09-20
River Wolf
My story is probably similar to others – my increasing physical pain and the related anxiety from fear of not being able to continue in a career (which I wanted to change anyway), led a GP to misprescribe Xanax long-term with no warnings or conditions. Tolerance and increasing dosages of Xanax directly manifested into severe chemically induced mental illness.
So . . . now is when I did a search and found out that this is part of the deal. My fault for not searching first. After realizing how seriously this drug has affected me, I started on a very slow taper. I settled into a taper based on cuts that stopped interdose withdrawal symptoms completely, but I was having severe general withdrawal symptoms comprised of the usual suspects. This intense suffering lasted a year and a half. This period was so difficult that I was certain that I would not survive it. I made a deal with Life that if I made it out, I would help others with all aspects of the journey, including the feelings of betrayal and the lack of knowledge and resources.
I found BB after jumping, and began posting to the forum to help others. I found that helping others is very rewarding, and it is helping me understand how non-linear and varied post-taper symptoms can be.
The good news is that I feel like I can accomplish anything in life after going through the intense mind training course we call getting free. I think in these terms because a passion of mine is integrating self-discovery and personal growth with mobile software.
Thank you BB Team for valuing my contribution.
River
2012-11-24
sleepprob
I was prescribed Cipro for an infection in 2008. The cipro took care of the infection rather quickly, but a lingering pain and a feeling of heaviness in my lower abdominal area persisted. As a result, I continued the cipro for about six weeks and started to develop anxiety and insomnia. As the abdominal discomfort would not go away, I became extremely anxious, had terrible insomnia and began to feel very depressed. After going to many doctors and running all kinds of tests, one doctor suggested I see a psychiatrist. I followed their recommendation, and was prescribed Klonopin by my pdoc. At first Klonopin felt like a miracle drug. I slept well for the first time in weeks, the anxiety was gone, and even the pain diminished. I was diagnosed with anxiety and "panic disorder" and was told that the standard treatment was for one year. At that time I had no idea about benzos and tolerance and dependence.
I continued to take Klonopin for months, and after about 6 months I started having very bad insomnia for no reason (unbeknownst to me at that time, it was tolerance). This disturbed me and my pdoc added Ambien. Soon after, even the Ambien and Klonopin did not work, and my insomnia was not improving. It was at this time that I began researching my medications online and gained the basic knowledge of the issues associated with benzo dependency. I began a taper off Ambien, and Klonopin which lasted a few months. I become benzo free in June 2009. Luckily the only symptom I experienced during the taper was severe rebound insomnia. This gradually faded as time went by. I am a social drinker, and did not take seriously the negative effect alcohol has on GABA upregulation and healing. I kept drinking occasionally and was never quite fully healed. I felt okay but never slept as well as I did in the past before the Cipro and benzo ordeal. I now know that the alcohol was impeding the healing process.
I continued this pattern of social drinking and my insomnia and anxiety persisted, albeit at a manageable level. One night in 2011 I drank alcohol and partook in some recreational drugs with my friends and in a few hours developed intense panic attacks and all the associated symptoms. The week following that night I had a few more panic attacks. I also had intense anxiety symptoms, dizziness, fatigue, tachycardia, and insomnia for one month. I concluded that my nervous system had been jolted and fought the urge to take benzos again. I visited several doctors, and after running various tests which came back negative, I knew inside that probably only psyche meds would help. My symptoms were so severe that I reluctantly agreed with my pdoc to go back on klonopin. The klonopin has helped a great deal, but I reached tolerance much more quickly this time, and the occasional drinking obviously was not helping. I decided to taper in August 2012, having learned my lesson in how to treat my body well. My current taper has been more difficult than the first time, but I have gained a lot of wisdom from my experience.
spengler
I was prescribed Klonopin, 2mg per day in 2001 during a period of acute anxiety. I first read the Ashton Manual in 2003, but continued to take Klonopin until 2006, and had extreme difficulty discontinuing it. I did a crossover to Valium and withdrew slowly, and did go off but continued to use other sedatives including narcotics and phenibut to deal with anxiety. As a result, I ended up back on benzos in 2009. In early 2011 I decided I wanted to get off again, and began to follow a different approach that included a lot of exercise and a healthy diet while I directly tapered phenazepam. In early 2012 I again crossed over to Valium, and spent 2012 continuing to taper off. I hit a real rough spot in the fall of 2012, and as a result added regular meditation to my protocol of regular exercise & good diet.
Tinnitus was my biggest problem through my taper (and one of the things that had driven me back on benzos), but by the end of 2012 my most significant concern was insomnia. I tried a variety of prescription medications, over-the-counter approaches, and medicinal grade cannabis, but was not able to completely withdraw from benzos until I stopped all of that and accepted that I might not sleep well for an extended period of time. Within a few weeks of withdrawing completely from everything, my sleep largely returned to normal, and I am overall feeling happier and healthier than I had in a long time prior to that.
As tinnitus, insomnia and severe acute episodes of anxiety were my biggest stumbling block, I am especially happy to answer questions on these subjects!
2013-05-17
BB Team
Beeper
I am a retired professional woman who spent nearly 20 years on benzodiazepines and a myriad of psych drugs, mostly for depression. The first benzo, Klonopin, was prescribed to treat restless legs syndrome, which resulted from my first anti-depressant, Prozac. Even when the Prozac stopped working and I was to switch to another antidepressant, the doctor didn't suggest I stop the Klonopin. I can't remember why he switched me to Ativan after about 3 years, but I slowly increased my dose of Ativan/lorazepam over the next 15 years or so. After taking multiple medications for depression over the years and then finally being diagnosed as bipolar, I ended up on some serious anti-psychotics which, along with the lorazepam, slowly changed who I was and what I was able to do. Eventually, I couldn't function at work and had to take early retirement. Still no doctor suggested that any of my problems could be medication-related. I was scheduled for ECT for severe depression and learned I'd have to (temporarily) get off the benzo (and Ambien and Seroquel) before they could induce the necessary seizures. That set me to looking for information on the Internet and ultimately led me to BenzoBuddies.
Once I found out all that benzos can cause and the symptoms of benzo tolerance withdrawal, I decided to just get off the benzo first and delay the ECT. It wasn't easy but I did successfully tapered off of lorazepam by July 2008; Ambien and Seroquel followed in 2009. After 20 years of relying on a medical solution for anxiety, I have learned to manage my anxiety without medication. Happily, there is less anxiety to manage now that I am free of the anxiety "treatment".
While still tapering I became a moderator and later a Senior Moderator. As with most members, as I felt better and was able to resume more of my life, I wanted to spend less time on the forum and stepped down. Still, I like to drop by most days and help out where I can.
2011-05-16
eljay
My story may seem a little different from many here at BB, as I feel that psychiatry and its meds saved my life. I was having severe, chronic insomnia due to anxiety over a now resolved health problem, Restless Legs Syndrome. I had tried various benzos irregularly, as they mostly stopped working in just a few days. I never wanted to increase doses.
The RLS and insomnia started in March 2007, and I started seeking help in April. By June, I felt like I was dying. I wasn't eating or sleeping and was non-functional. I had lost a tremendous amount of weight. I was so sick and in such despair, I felt I wanted to end it. I was told to go to ER. The first one turned me away, the attending physician telling me, "Insomnia never killed anyone... Go home and get some sleep"...! The next day, a neighbor drove me to another ER, over an hour away, that specializes in Psych cases. They admitted me to their psych unit, where I was put on what the psychiatrist referred to as "the big guns" – 1mg Klonopin and 100mg Seroquel at night. I slept – long and deep. The next day, life was brand new. I was there for 72 hours and had a very positive experience.
To make a long story short, I remained on this medication regimen for about 4 more months, at which time I decided they weren't really working anymore and I felt like my initial problem was mostly resolved. I did suffer from depression while taking them, though at the time I just thought it was me. I tried tapering, much too fast, and developed tinnitus. When I made a search on benzos and tinnitus, I found BenzoBuddies!
Anyway, I had a pretty uneventful withdrawal. It took me four months. Of course I had all the classic symptoms, but mostly tolerable. I tapered off Seroquel simultaneously. Amazingly, the depression lifted the lower I got.
I made many friends here, and had a great time. When I was asked to be a mod, I felt so honored. I jumped at it, worked my way up the latter and here I am still!
It does my heart good to see people come here seeking help and then watching them improve daily, both physically and emotionally. During setbacks, the team and members are always there to hold them up. They all did this for me, way back when, and to be able to return the favor is a privilege.
2009-07-13
Schatje
Hello! I was originally prescribed Clonazepam when I was only sixteen years old. I had a run of some anxiety problems as a teenager and a doctor I met said I would need to be medicated. So I was put on several SSRI's – all of them giving me unpleasant side effects. When one wouldn't "work", I'd be taken off of it one day and put on a different SSRI the next day. Neither my family nor I knew that this was not the proper way to come off of SSRI's. So after many attempts to get me stabilized with these meds, I was finally given Clonazepam to settle the increased nerves I had caused by the SSRI's. I was prescribed it to be taken only "as needed". I did this well into my adult years. I could go months without needing one and then would have a run of days where I would take one pill to help me through some stressful times. Any doctor I met in the future praised these meds and said that I could safely take them for life if need be.
When I entered my 30's, I began to feel more stress as a mom. My family doctor prescribed me 1mg of Clonazepam to be taken daily. For the first few months, I was okay – not 100%, but better than before. However, after those few months I can remember sitting on the sofa with my husband one evening and saying, "it's strange, when I take the Clonazepam, I don't feel the relief I once felt". I then got myself into a bit of a vicious cycle of doubling up doses to feel relief, but then having to skip other doses so that I wouldn't run out of pills. I didn't see the harm in it because it had always been stressed to me by my doctor that it was "safe to take your entire life and if you need an extra just take one". My life quickly spun out of control and the anxiety I once experienced before, now had become full blown panic attacks that lasted hours in length. I was sick to my stomach almost every day and my emotions were all over the place.
I finally met a new doctor – a Psychiatrist – who believed I could fulfill my dream of becoming med-free. She began my taper off of Clonazepam and that's when things really got rough. I made a 25% reduction my first cut (under her care) and the days following became clouded with paranoia, anxiety, diarrhea and insomnia. It took me 2 months to finally do my own research online and that is when I discovered Benzodiazepine Withdrawal. It made sense now! I cried with relief that day knowing this wasn't the "real me". Since then, I completed a 10 month taper which included crossing over to Diazepam. On July 19, 2011, I became free of ALL medication. My taper was very difficult and included many side effects such as GI issues, lack of appetite, weight loss, panic attacks, muscle spasms and more. I have seen the majority of improvement since hitting the 6 month mark. I am steadily heading in the right direction and look forward to fully healing.
2012-03-29
Development Team
Gatekeepers
Documentation
Colin - founder of BenzoBuddies
In the summer of '98, after about ten of years of misdiagnosis, I was correctly diagnosed with Brainstem Myoclonus. I was prescribed Rivotril (clonazepam).
Generally, when prescribed as an aniticonvulsant, Rivotril is taken in large doses – I was taking 4.5mg per day. At first, I thought it was the answer to my prayers, as it greatly reduced the myoclonic jerks. However, after about a year or so, the frequency of the jerks started to increase again. After consulting my neurologist, he explained that I could either increase the dose (but should expect to eventually become tolerant to the new dose too), or I could taper off, take a break, and reinstate. The cessation, break, reinstatement option seemed the more sensible course of action. So, after about 21 months of use, I tapered off 4.5mg over a period of about six-weeks (as suggested by the neurologist).
Well, I became quite ill during the withdrawal, but somehow I coped. That is until one morning, a day or two after my last quarter-pill dose (0.125mg), I awoke to find that I was completely numb down the whole of my left side (everywhere), and that I could barely move my left leg and arm. I had also lost all sense of taste and smell. In hindsight, I was quite confused too: although I was fully aware of the strange neurological symptoms, and even though I thought them to be the result of stroke, I was not at all inclined to contact a doctor! It was only because of the insistence of a friend that I made some phone calls. I eventually talked to a neurologist who told me that my symptoms were the result of my withdrawal from Rivotril. I immediately reinstated 0.5mg, and after about a day, and although I still felt dreadful, much of the numbness disappeared.
Somehow, I managed to stay at this low dose for two weeks. I reasoned that although not completely off Rivotril, a break at a low dose should help reverse my tolerance. After two weeks at this low dose, I gradually reinstated 4.5mg over the following 5 weeks.
This break did indeed improve the effectiveness of the Rivotril. However, there were diminishing returns. I found that I had to go through this withdrawal, break, reinstatement regimen about once a year, and for limited results. I went through this thirteen-week routine three times, and although I was in a thoroughly confused state of mind, I eventually somehow realised that I had to get off Rivotril for good.
Beyond my personal experience, I had no knowledge of the issues surrounding benzodiazepines and benzodiazepine withdrawal. In fact, I had no idea that I was taking an anxiolytic/hypnotic drug related to diazepam (Valium). But common sense told me that for my final taper, I needed to taper off over a much longer period than six weeks. I do not recall setting a time frame; I think I made new cuts when I felt reasonably able. I instinctively reduced the size of my cuts as my dose fell. The whole process took six months to complete (six months to taper off such a high dose of Rivotril is considered pretty fast within benzo circles – especially as I had already demonstrated strong dependency/addiction to this drug). I was very ill towards the end of the taper. In fact, in some ways, I recall this slower taper being worse than my earlier six-week tapers. Though, I think this is just perception; my memory of the six-month taper is better, and I had probably become more dependent over time. Having little memory of the earlier tapers helps to protect me from the trauma of what happened. Somewhat like benzos being prescribed as pre-meds: they help make people forget about the experience, so there is less post-op trauma. Well, that's my take on it.
Anyway, I was one month into 2003 and benzo-free. However, I was ill – so very ill. I was also very confused. As I recall, it was about the month of May before I started to make some enquiries about benzodiazepines. Everything up this point had been carried out in an informational vacuum. I could not understand why I continued to feel so poorly having quit months earlier. It didn't take me long to find that I was not the only one to suffer severe withdrawal effects after quitting benzodiazepines. And I wasn't the only one to suffer withdrawal symptoms several months after my last dose.
To find out more, and seek some help, I joined a benzo forum, but was thoroughly dissatisfied with the experience. They seemed determined to dwell on the negative. Although I felt ill, I knew that I was improving. And even though my experience with Rivotril was personally very traumatic, I understood that benzodiazepines have some pretty unique properties in treating rare conditions (not just Brainstem Myoclonus), and for emergency Status Epilepticus seizures too. The often-exclaimed mantra benzos should be banned seemed ridiculous to me – it struck me as nothing more than another dogma, no better than Valium - mother's little helper. In addition, the officially sanctioned doctor-bashing at the forum I joined seemed irresponsible and counter-productive. Of course, most of the members of BenzoBuddies too (myself included), are thoroughly dissatisified with the medical treatment we have received. However, we all need doctors, even if just to write out our benzo prescriptions. Whatever the shortcomings of a particular doctor, or the medical community as a whole, I still prefer to seek the advice of a professional over that of anonymous individuals on the Net (I know, this must seem pretty strange coming from the founder of medical support group on the Internet, but we have a responsibilty to ourselves to seek professional medical opinion when it comes to our health). I was fortunate that I only happened upon the 'support' forum when already partly recovered. In a spirit of 'I can do better', I registered BenzoBuddies.org, and with the help of two like-minded individuals, we set up the BenzoBuddies support forum. We opened doors in September 2004.
I was to take care of the technical side of things for BenzoBuddies. 18 months had passed since I quit Rivotril, but I was still pretty fogged. I had improved, but was still operating far below of what I was capable. Of course there is a learning curve with everything new to us, but I found it extremely difficult to understand even the most basic elements of webpage mark-up. It has taken me years to return to anywhere near my normal self. Over my years here, I had many ideas to further develop this website, but would usually feel overwhelmed, still too unwell to drive things forward. It is only quite recently that I have felt well enough to return to some of my half-finished projects and ideas – this profile being one of a miriad of uncompleted tasks.
My tale might seem pretty scary to someone looking to quit benzos. There are, however, a few things that you should keep in mind. Firstly, my experience is at the extreme and rare end of the spectrum. Secondly, my severe withdrawal symptoms are probably partly connected with my neurological disorder. Although the symptoms I suffered are not associated with Brainstem Myoclonus, my condition does involve a dysfunction of the GABA system in the brainstem (benzos act upon GABA receptors). I am probably far less resilient to the withdrawal effects of benzodiazepines than the general population. Thirdly, even though I was so poorly and fogged, I have largely recovered.
The thing that seems to help me most (it has taken me a long time to realise this), is the total abstinence of alcohol. I have suffered truly horrendous insomnia since quitting benzos (sometimes sleeping only 1-2 hours per night for weeks or even months at a time). It appears that even just a drink or two, every few weeks, is enough to upset my system on a continuing basis. My best guess is that my GABA system is still compromised, but my brain chemistry will achieve homeostasis if I do not take anything that acts upon GABA receptors (this includes alcohol). I also have noticed that many members of the BenzoBuddies forum have reported setbacks after consuming moderate amounts of alcohol. I rarely give 'advice', and my evidence is anecdotal in nature, but I advise those tapering to quit alcohol until they feel fully recovered. After all, quitting alcohol will do you no harm, is unsafe to consume with benzodiazepines, and might just help with your benzo withdrawal.
So, to sum up, even in the most extreme cases, total (or near total) recovery is possible, and highly likely. Even if you are slow to recover, you will still experience improvements along the way. I've been slow to recover, but there are positives to my experience too: whenever we overcome a great problem, we can only grow stronger!
I wish you all every success with your withdrawal from benzodiazepines.
2009-06-10