Administrators
Starbird
I was prescribed Xanax for anxiety and panic disorder after my husband died, I was told at that time that I would be on Xanax the rest of my life. My doctor told me that the therapeutic dose was 4 mg so I was to increase the dose until I got to 4 mg.
I was later prescribed an anti-depressant to combat the anxiety along with Xanax. This continued for the next 18 years, though I was able to taper down on the Xanax to a comparatively low dose of .75mg a day. After running into complications and failed attempts at stopping the antidepressant, my doctor told me to “just quit and tough it out” so I did. That was the beginning of my real battle with benzos. The panic attacks came on like a freight train, like I had never experienced before! I was sick and hallucinating and was advised by my doctor to increase the Xanax to relieve the problem. I increased the dose from .75 mg to up to 4.5 mg in about 4 weeks. Shortly after, I became tolerant and was only going to need more and more to get relief. The drug then seemed to have a paradoxical affect and started to cause the anxiety and panic attacks.
My doctor warned me that he was going to stop prescribing it and to find another doctor, that he was going to cut me off. I was losing way too much weight and wasn’t getting any relief so I decided to just check into a medical detox. The withdrawal was incredibly scary. I had a hard time breathing, my blood pressure shot up and it felt like my organs were cramping and twisting. I was awake for 5 days and afraid to lie down in the bed for fear I'd never get up again, I thought I was going to die. I was given anti-seizure medication to survive the stay.
After 5 days, I was sent home with Phenobarbital and Neurontin to take for the following few weeks/months. About 2 weeks after I got home, I started to feel absolutely horrible and terrified that I was damaged. l had amnesia, I felt incredibly ill, I was stuttering and my motor skills felt off. It was taxing even to walk or write my name. Medical testing showed nothing was wrong, I was in acute benzo withdrawal. In researching this, I found BenzoBuddies and a wealth of information and friendly everyday people who understood the sickness, horror and torture of what I was going through.
I am finally benzo free after over 20 years and my life is coming back so much richer than ever before.
2011-06-07
Hope1962
I'd been fighting anxiety all my life. About 5 years ago a well-meaning doctor gave me a prescription of clonazepam. At first it seemed like a miracle. It was the "magic" I'd been waiting for. It wasn't too long before one "magic" pill didn't seem to work. My anxiety returned. So, I took two pills a day (.5 mgs each), then I was taking three, then 4. There came a time when even 4 pills (2 mgs) of clonazepam were having no effect on me at all. After that there were some days I was taking 3 mgs or maybe even 4 mgs. It was getting out of control.
I'd been in and out of therapy for 15 years learning, through cognitive therapy, how to deal with depression and anxiety. I decided it was time to end my long relationship with clonazepam and take control of my life with the tools I’d been paying a lot of money to learn. I knew I had to taper off the drug but I didn't know how. Frankly, I didn't believe my body was addicted to the stuff even though I'd been taking it for 5 years.
I dropped my dose to 2 mgs a day. Depending on how much I'd been taking (and because I was all over the map in terms of how much I'd take in any given day, I'm still not sure) that could have been well over a 50% drop. I felt horrible. That's when I went online to learn more and found BenzoBuddies. I was scared. I posted a message here and got an immediate response. There was concern that, because of the large drop of my dosage I could get very sick. Fortunately, I got through those withdrawal symptoms and learned the proper way to taper. Since then I've been tapering slowly. Yes, I have some symptoms but they are very manageable.
I look at this experience as a blessing. I've learned that I can deal with anything...be it anxiety or the strange sensations of benzo withdrawal. I feel empowered and I know I will come out of this stronger than ever.
2011-09-17
Technical Administrator
Senior Moderators
Moderators
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
ByByMatrix
I started taking Klonopin for panic attacks 18 years ago, which did seem to work for a while. Over the years my dose slowly increased and my personality changed. I had become someone that didn't care whether others lived or died, succeeded in life or failed. In fact, I liked watching others fail. I didn't like what I had become. So, without doing any research, I quit taking Klonopin November 30th, 2009.
The first day after quitting, I woke up with a hot metallic taste in my mouth and decided to do a quick search on Klonopin withdrawal. The site I found listed symptoms such as metallic taste, increased anxiety, panic attacks and insomnia. I already had those symptoms and thought, well, I should be able handle the symptoms fine. Well, day three hit and everything let loose. On that night I woke up in shear terror and panic. The days that followed were even worse as I had the most terrible pain along with my skin feeling like it was on fire. (Note: I had several tests done before quitting, from brain scans to a colonoscopy. Since being cleared with a clean bill of health, I knew the symptoms I had were from quitting Klonopin.).
Because of the pain and severe insomnia, I started to increase my Ambien dose and made up an excuse to have an old Percocet Rx renewed. My addiction to Ambien and Percocet were soon out of control. My Doctors became aware of my abuse and wouldn't give me another refill. So, at the end of April of 2010, I ended up doing another cold turkey. Although I stopped these drugs quickly, it didn't seem to really change things for me mentally or physically. While I was still on Precocet and Ambien and even after I stopped both, the waves of symptoms still kept happening. I'm not proud and feel disappointed that I let this happen, but that's who I was and I am not that person anymore.
Even though things did seem to be improving somewhat, I still felt like a lost soul and wondered if this would be my new self. My family even pressured me to reinstate and said, 'some people just need to stay on this medication'. After they said this, for some reason my wife started to do some research and found BenzoBuddies. I'll never forget the first time reading some of the posts. I felt so happy that so many questions were answered, I almost felt healed.
After joining this forum, I had many ups and downs. One of which was a Cipro steroid reaction and that felt very close to the cold turkey I had done earlier with Klonopin. That was another very dark time for me. I even told my wife to be ready, because I didn't think I had the strength to make it this time. Well, don't ask me how but I managed to push through it, but I did. In time, the intensity of symptoms decreased and the symptom-free windows started happening again.
About three weeks ago, I woke up and my wife told me to go look at the whites of my eyes. When I looked they were white! Since that time my sleep has returned and have had not had anymore mental or physical problems.
I have also been testing myself by going out in public and doing a really intense workouts. I have no more muscle weakness, or anxiety when I'm around people. I'm symptom free and feel very confident I'm totally healed.
Take your time, follow your taper, get support from your Buddies, ask questions and research as much as you can. You will heal from this and realize the fight was all worth it.
2010-09-20
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
Missy
I first took benzodiazepines in October 2006, after the unexpected death of my sister. Having had a prior history of alcohol abuse, my GP thought giving me 1 mg Xanax per day would keep me from returning to alcohol. Six months after starting, I told him I no longer wished to take Xanax, and he said to "just quit". I followed his instructions and found myself in the ER 4 days later. The ER doctor told me I was in severe benzo withdrawal, and he gave me Klonopin and told me to return to my GP. While waiting for my appointment, I search the Internet and found the Ashton Manual. Armed with this information, I returned to my doctor and he threw my research in the garbage and told me I could not possibly be suffering Xanax withdrawal symptoms because I was on "such a low dose". I made many appointments with different doctors trying to find one that would help taper me off by substituting with Valium (as per Prof. Ashton's protocols), and finally found a psychiatrist who, though had never assisted anyone taper off benzodiazepines before, agreed to help me. We were successful!
Then, six months post benzo, I thought I was well enough to resume drinking wine with dinner, and I could not have been more wrong. I found myself back in severe withdrawal and returned to the psychiatrist for help. He placed me back on a much higher dose of Valium and we did another successful, albeit, very slow taper. Neither of us understood at the time that reinstating was a bad idea.
During this time, I believe I suffered every withdrawal symptom known to man, plus a few others. I became a severely depressed, debilitated, agoraphobic hypochondriac. I had numerous medical tests, and with the exception of some vitamin deficiencies, everything always checked out normal. Were it not for the encouragement and love I received from BenzoBuddies, I doubt I could have ever crawled out of that pit. Knowing others were experiencing similar problems, and understanding that it was benzo withdrawal was causing my symptoms, I felt a new freedom knowing that others had recovered and I would as well. I successfully tapered off, and felt better than I had in years – almost 100%!
Unfortunately, a month later my new GP gave me a steroid for a non-benzo related condition, and I was back in the ER with steroid induced psychosis. Unbeknownst to me, the doctors there loaded me up with benzos while I was in the hospital, and within a few days, I was again physically dependent and having to start a new taper. I am almost finished with my taper and although I do have some withdrawal symptoms, I know I will recover and will never traverse this road again. I now carry around an emergency card in my purse that states "Do NOT give me any type of benzodiazepine or steroid". I have not drunk alcohol in a very long time, because I know that for some of us, it can make healing much harder. The good news is that my psychiatrist has become very successful in helping others taper off benzos, and I am thankful to have been his first "experiment" because now he is informed about what benzodiazepines can do to a person and he is no longer prescribing benzodiazepines. His courage to try something no other doctor I approached would, plus the love and support I received from so many people here at BenzoBuddies has made all the difference. Benzodiazepine withdrawal can be hard, it can be difficult, but it can be done and we don't have to do it alone.
2010-09-01
Development Team
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 mirriad 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