Team Roles Within the Community
Moderator
Moderators moderate behaviour, enforcing the rules where necessary, and help iron out the occasional argument that might arise on the forum. In addition to these obvious functions (as implied by the role title), our moderators have demonstrated a compassionate nature, and a good understanding of the basic issues surrounding benzodiazepine withdrawal. However, we should make clear, moderators are not 'benzo experts', and no member of the BenzoBuddies team claims to have all the answers. All of our members are encouraged to give support to their fellow Buddies.
Moderator Team
Although our Moderators are assigned their primary areas of responsibility (their names are listed with the boards they 'moderate'), they actually possess moderation powers for all the forum boards. On boards where they are not listed as a 'Moderator', their posts carry the title of 'Moderator Team' instead.
Senior Moderator
Senior Moderators ensure that the Moderator Team work as a team, and support and advise Moderators in their moderation duties. They might sometimes become directly involved in a particular moderation issue, depending upon the circumstances.
Administrator
As the title implies, the role of Admin involves managing the forum: organisation of the forum content, resolving registration and login problems, and a whole myriad of other organisational and technical issues. Admins also manage the BenzoBuddies forum team, appointing new team members, and formulating forum rules, policies, etc. In short, Admins are in charge.
BB Friend (Friend to the BenzoBuddies Community)
This title has various uses. Usually, BB Friends are past active members of the BB Team, and although no longer have any formal duties, they continue to feel they can make useful contributions to team discussions, helping to further develop our community and website. The title might also be used to honour a past (now inactive) member that held a senior role in the running of the forum. Additionally, BB Friend is used to honour members that have passed away.
It is possible that BB Friends might come from other routes too. From time-to-time, where their input is considered valuable, we might invite a Buddie with particular skills or insights, or even someone from outside of the BB community to be a BB Friend. BB Friends do not have access to the moderation area.
Documentation
Those in the Documentation role help write and develop useful material for the BenzoBuddies website and forum. The Documentation role does not provide access to the Moderation area.
Developer
Developers assist with technical aspects of the development of the BenzoBuddies forum and website. Although the Development role does not normally provide access to the Moderation area, they might – from time-to-time – have theoretical access to these materials in the process of carrying out their technical duties.
Lead Developer
The Lead Developer provides technical support to the forum administrators, helps develop new content and features for the BenzoBuddies website, and assists in the writing of support materials for the forum moderators and members. The Lead Developer has access to all areas of the forum and website.
Administrators
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
Theresa2
I was 49 years old and was given clonazepam after suffering a panic attack while caring for my ill mother. No one told me about the potential dependency problem with benzodiazepines. After being on them for 8 weeks, I started researching; this brought me to BenzoBuddies in February 2008. They helped me to set up a taper schedule after the doctor had given me one that was too fast. It became extremely difficult when I was down to .25mg so I switched to titration.
It was discovered that my thyroid was out of whack and was adding to many of the withdrawal symptoms I was experiencing. Once my thyroid condition was stabilized, I finished my taper and am happy to report that I am doing well!
I was asked to help out as a moderator back in March 2008, which was somewhat intimidating at first, but I have managed to learn a lot by reading hundreds of posts, researching and being helped out by Colin and other team members. Later, I became a Senior Moderator, and now administer the forum with Eljay.
2009-06-07
Senior Moderators
ladyh48
I'm a retired benzo veteran, and mine is your typical benzo story. Mom gets put on anxiety medication by her well meaning M.D., and 15+ years later is still on it. The same pill that made life bearable for so many years, eventually backfires and getting off the medication is the only remaining option. I was crossed over to Klonopin from Xanax for my taper. Thankfully, I found BenzoBuddies shortly before beginning my taper, and made education a part of my journey. With the help and encouragement of everyone here, I planned my taper, and was able to jump off safely at 0.125mg of Klonopin daily. I retired the benzo bottle May 3, 2009, and soon I will have a Success Story to write!
My taper was a good one, and post benzo so far has been even better! I feel that getting to moderate here at BenzoBuddies, and encourage others who are struggling has really had a positive effect on my taper. Each time a buddy celebrates being benzo free, I also feel blessed to have been a part of someone else’s journey.
2009-06-10
Moderators
adelia
I was a perfect sleeper my whole life, until I developed insomnia in the fall of 2003 as the result of severe nerve pain in my face – I was prescribed Ativan. At the same time, a Mack truck called menopause rolled over me. A few months later, my new neurologist gave me Klonopin to sleep – thinking its anti-seizure effects might help the nerve pain. I took it every night for the next 5 years, working up to a dose of 1.5 mg.
Somewhere in 2007, I started randomly dropping my doses to 0.5 mg and even 0.25 mg – thinking I didn’t need it as much anymore. Of course, I would start feeling pretty sick within 3-4 days with worse sleep, so I'd back up my dose to 1 mg. This began a cycle of up and down dosing that I can only look back on as horrific! I had no idea what I was doing to myself, as I had no idea what a benzo really did, other than help me sleep.
In 2008, I was sick most of the time, with what I know now to be many benzodiazepine withdrawal symptoms. I tried every natural and alternative treatment I could find. I started seeing lots of new doctors. The diagnosis was usually the same – either nothing, or something along the lines of fibromyalgia. Not one doctor ever asked about my Klonopin dosing. It simply was not thought of as a factor, or worth a discussion.
One day, I looked at the Klonopin drug information sheet (from the pharmacy) and realized that many of my mysterious symptoms were listed as "side effects" from taking Klonopin. Somewhere inside me, I realized that not only did I have to get off Klonopin, but also the full-time opioids I was taking for pain. How else would I know what was really happening? I didn’t know what I’d do for the pain, but I somehow wanted to get my health back. It might be a rough road, but it was one I must take.
The opioid cold turkey was fairly uneventful compared to what was to come with the Klonopin taper. My real benzo education had not yet begun, so I headed off it just as fast as I could. Keeping my heart rate under 110 with no seizures were my two main goals. About this time I (finally) found the Ashton Manual and latched onto the advice not to go back up. So I headed downward in a kamikaze dry-cut taper that I wouldn’t recommend to anyone. I just didn’t know how else to do it at that point and I wondered if I might be just screwed up enough physically to warrant a fast taper.
I was not prepared for just how sick I became towards the end, and following my last dose. It suffered intense brain and body distress (including GI), with waves of flu-like aching lasting for days. I was totally incapacitated for weeks. And yet, even during that time, I would get moments of relief and a vision of normalcy lasting an instant that kept me going – this, and sheer stubbornness against a drug that had almost got the best of me.
The weeks turned into months, sleep has slowly improved, brain and body get better every month, and I am recovering and moving forward with my life. In some ways, I feel a brand new person forming inside me, with a newfound respect for my capacity to endure.
Why I had to go through the misery and suffering of this benzo experience is a question I know many of us ask, even though our stories are different. That I was so uneducated about benzos makes little sense to me. With a science degree and a holistic background, I would research most medicines I take. I can only think that I was supposed to go through this benzo recovery journey, and somehow end up here, now, with many new BenzoBuddies – all of us helping each other. So, everything has worked out just right. And, it’s all good – if I can let myself see the positive gifts I’ve received from the unforgettable place I’ve been.
2009-09-29
lynnie
I got married and had my first baby when I was 18. A few months after my son was born, I went to the doctor because I wasn't sleeping and felt a bit depressed. The doctor put me on tranxene which helped me for a while. However, by the time I was 19, my marriage had ended and I was a single parent bringing up my son on my own; I went to see my doc again and he decided that tranxene was not working and switched me to Ativan instead, which I was on for about a year. Then, out the blue, he said that I didn't need these anymore and stopped prescribing the Ativan. I felt OK for a few days, but one morning I was hit by withdrawal symptoms – I thought I was going to die, but I somehow managed to get to my parents with my son. As soon as my Dad saw me, he knew what was wrong with me as he had been on Valium in the past. So, he made an appointment with the doctor for that afternoon and the Ativan was immediately reinstated. I have never been so pleased to take a pill! A few months later, he prescribed diazepam, which I was fine on, and kept on taking them for the next few years with no problems.
I was 20, and divorced, but found a job I enjoyed and was bringing up my son on my own. I was doing well, but still taking diazepam. I started going out to socialise, met new friends and had some fun. I really enjoyed being a single parent. I worked hard to give my son everything he needed and we were comfortable. At 24, I was happy, so decided to quit the diazepam. I was a social drinker, but felt poorly, so I started drinking more to compensate. Two days before my 26th birthday, I quit my job because I was no longer able to cope. I realised I was drinking too much – I had the shakes and was so ill for days – so called a new doctor who told me I was an alcoholic and it was my choice if I wanted to quit or not. I decided to quit.
The next few months were a struggle. I moved to make a fresh start with my son. A few months later, I met my partner and things seemed to go well, but I still experienced anxiety, feeling sick and panicky. I tried anti depressants, but they disagreed with me, so at the age of 28, my doctor finally put me back on diazepam. I found that I didn't even need to see the doctor – the prescriptions were always available.
At 33, I gave birth to my daughter; she was premature, only weighing 2lb 2oz. It was a very stressful time, but I didn't increase my dose (which was 8mgs a day). My daughter was in ICU, but did really well. After six weeks, we took her home and she was absolutely fine. Two years later, I gave birth to my last baby – a boy – also prematurely. But, he was so tiny; he only lived for an hour. I still don't know how I got through this. Everything was going fine, then I gave birth, and next we were planning his funeral. I was still taking the 8mg diazepam, and I somehow managed to get through. Eleven months later, my Mum and Dad went on holiday to Spain. On the first day they were there, my Dad had a heart attack and died. I had lost the one person I was closest to, no matter what I did in my life. My Dad was always there for me, and I absolutely fell apart when he died. Within a few days, I was up to 20mgs of diazepam per day, and stayed there for about a year.
Then, one day, I had a huge row with my doctor and he shouted at me that I was a drug addict and to find another doctor – this, I did. The new doctor was happy to prescribe more pills. I saw little of her; I just collected my prescriptions until she left. I then had to see another doctor, who said he was taking me off the diazepam and informed me that he would be cutting my prescription by 2mg a week. I panicked and found yet another doctor – this was 2006. I was with this doctor for about 6 months when he called me in and told me I had been on diazepam way too long; I was too young to be stuck on them. He proposed gradually reducing my dose over a two-year period. He was the only doctor to sit me down and talk to me about it all. I didn't even realise I was addicted to diazepam – how could I be, when it was doctors who put me on them? I found BenzoBuddies, and with a lot of help and support, in July 2008, after about 25 years of being addicted to benzodiazepines, I was finally benzo-free!
2009-08-30
Lead Developer
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 I somehow coped. That is, until I quit the last quarter-pill (0.125mg). A day or two later, I awoke one morning 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 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