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My Story

Here is a collection of members' stories in their own words. How they came to be on benzos in the first place, where they are at now, where they hope to go, and how they feel about it all.

Jenny

My name is Jenny. I live in the UK. I am a very long time user of valium, 31 years to be exact.

I was prescribed it by a doctor as I was so stressed out in my first teaching job with handicapped children. It worked for a couple of weeks, then I became agoraphobic. I could go almost anywhere as long I was with other people I trusted; I managed to travel a lot to Russia, Poland, and most of Europe. I just thought it was me, but looking back I was never very well on it, I did function. I held down some wonderful jobs, went to college, and life was ok until four years ago.

I started drinking too much. I didn't know why, but I do now. Benzos and alcohol use the same receptors. I was basically topping myself up with liquid valium when I got myself admitted to hospital to detox from alcohol. The day I was admitted was the worse day of my life. I was overdosed on 100mg of valium supposedly to stop withdrawals from alcohol which I wasn't having as I never drank in the day. From the day the suicidal thoughts started - the shaking, the panic, the loss of taste, the loss of the ability to communicate, the loss of concentration - the monophobia started (the fear of being alone), and much more. I was housebound for a year. The panic was too bad to leave home. Not only was I trapped, but my dear husband, Ian, could go nowhere either. After six months of this, I took what should have been a fatal overdose and said "goodbye cruel world". I woke five days later in intensive care. I guess God didn't want me to die and kept me alive for a reason.

I tapered for a year. When I came off, I was able to go out again and was able to travel to see my darling brother. He was then diagnosed with terminal cancer, and everyday my sister and I would travel to care for him. He lived alone and died three months later. I am nearly three years off, and I guess it's taking so long as I was on the valium a long time, and also that last high dose must have blown my brains out.

I can now drive, do housework, eat again without food tasting of metal and cardboard, socialise, and of late I have gotten a little voluntary job helping to organise the village festival. I am going for a meal with my friends, the first time in nearly four years. So I guess you could say I am getting there. My life has been hell on earth for the last couple of years, but I can see light at the end of the tunnel. I really don't want to frighten anyone, but it's probably my long term usage that has put me in this situation.

Genie

In 1998, I was a fairly well-adjusted, happy woman of 52. I had just graduated from court stenography school, and I was about to embark on a new "career" as a court stenographer.

The week following my Dad's sudden death, I had to deal with taking my Mom home to live with us and with starting a new career. I had no time to grieve for my poor Dad or to rest, for that matter. I was in shock because of the way Dad had died, but I had no idea how to deal with this. It wasn't too long before my body started to give out. I lost tons of weight, and I was sweating all the time. My eyelids twitched so badly that I was unable to shut them at night in order to sleep. I thought this might be menopause, but it turned out to be an overactive thyroid aka Grave's disease. The doctor put me on Tapazole and Ativan. No one ever told me that Ativan was a benzo or that it was habit-forming. I thought it was anti-thyroid medication, and I took 2mg a day, as prescribed.

Some time in 2001, I got sick again. The doctor doubled my dose of Ativan. I assumed he did this because my thyroid condition had worsened. I felt fine for a few months, but by and by the symptoms returned. At the same time, I also had contracted intestinal parasites, and I had to be hospitalized. While I was in the hospital, my gastroenterologist told me I had a "benzo problem." I was told I had become addicted to Ativan and needed to taper myself off the drug. I was also told that one of the reasons I felt sick all the time was that the Ativan was no longer working. I had no idea how to taper off the benzo and neither did the doctor. So, I did a kind of kamikaze taper, and I managed to taper myself down to 2.5 mg per day in a few months. That's when all Hell broke loose.

Every day at about 4 p.m. I started shaking, my head hurt terribly and my blood pressure went through the roof. Taking my dose of Ativan only made these symptoms worse. I found the benzo group and the Ashton Manual, but I couldn't find a doctor who was willing to switch me to Valium, try as I did. Finally, in desperation, I checked myself into a detox clinic in Miami, in spite of the fact that folks had warned me that detox wasn't the answer. But, what choice did I have? My doctor refused to switch me to Valium and he refused to give me any more Ativan! The only other alternative would have been going cold turkey minus the medical supervision.

After I emerged from detox, I was a complete basket case. The constant anxiety and relentless insomnia were bad enough, but the pain in my back and side were excruciating. I prayed to the Lord to take me. I didn't sleep at all, and I urinated every 10 minutes. I was convinced I was going to die any minute, and I coined the word "dietox." I really was deathly ill. The problem is that no one knew what was causing the pain and the raging fever. I was diagnosed with everything from pancreatic cancer to bipolar disorder.

As fate would have it, a friend of mine met a man in a hardware store, who turned out to be a doctor. He told her I should come to see him. His name was Dr. Whitmont. I went to see him, and I told him about my benzo ordeal. He looked at me and said, "I've treated patients for benzo withdrawal, and I never saw anyone as sick as you look." He told me he would help me, if I agreed to go back into a hospital and have some more tests. He told me he suspected Lyme disease and kidney trouble.

Sure enough. I had advanced Lyme disease and a severe kidney infection. The Lyme disease was the result of a tick bite, but I don't know what caused the kidney problem. My feeling to this day is that the dietox brought it on.

But, at least I finally had a competent doctor. Thank God for that!

The bad news was that I had to reinstate onto Valium in order to taper correctly this time around. Dr. Whitmont hates benzos, but he felt my system was far too fragile for me to remain benzo free back then. If I hadn't reinstated, I surely might have died.

So, in September of 2002, I reinstated onto 30 mg of Diazepam, and I began a slow taper the following month. I won't lie to you and say that tapering was easy. It wasn't. The worst symptoms were headaches and agoraphobia. And, I had my share of benzorrhea and benzomania. But, I managed to stabilize after every cut, and I succeeded in getting off the Diazepam. I tapered more slowly than most people, which is why I call myself the Turtle Taperer. It took me from October 2002 until May 2005 to taper off 30 mg. When I got down to the low doses, I started using liquid Diazepam in order to measure my doses more accurately. I also tried to eat nutritious foods and I took amino acids in order to calm down my nervous system.

Right now, I am six weeks benzo free, and I'm doing well. I'm getting my life back again. I'm having my benzo poems published. I recently gave a concert. My husband is happy to have his wife back again. And, I'm happy to have my life back again.

The moral of this story is that it is possible to get off benzos if you want to badly enough. In my case, the benzos made me so sick that I had no choice. I suspect this is true of a lot of people in this forum. For a while, I never thought I would succeed because it was taking me so long. But, there is an advantage to going slower. Instead of having awful symptoms, the symptoms are at least tolerable.

And, last, but not least, take some advice from this turtle. Going very slowly at the end of one's taper is REALLY important. Too many folks jump off at 1 mg and live to regret it. Some people even reinstate at that level. I tapered myself down to a measly .05 mg, and I didn't feel any differently off the benzos than on them by that point in time. I still have some hot and cold flashes, and my thyroid is out of whack. But, all in all, I'm so glad I am finally off this poison. And, I never could have done it without Dr. Whitmont and without all my buddies in the benzo groups!

Love, Genie

I

When I started to take benzos I was in college. Somehow I took them to fall asleep more easily. I soon began to have panic attacks but I didn't know that the benzos caused them, so I took more benzos to help me with the panic.

I had chronic pain before I took the benzos, and with the ongoing consumption the pain spread everywhere in my upper body. Some months after the first dose I also got derealisation along with panic; and in an attempt to ease these symptoms it all lead to nothing but a downright benzo abuse. I just took them like candy, but I had no idea that all my symptoms were benzo induced or aggravated by them.

I got a contraindication after a very heavy evening dose, and so I had to almost drop them cold turkey. I came off of them easily as I wasn't addicted, but the derealisation stayed for many months. When the derealisation lifted I got very strong pain and anxiety.

Now, a year off, I still have too much pain and nightmares and some anxiety. I don't expect the pain to leave anytime soon because I have had strong pain before the benzos as well, and the nightmares are caused by the pain also. But I'm very positive that I will be absolutely anxiety free soon.

~ I

Martha

I started taking Klonopin in 1991 for brain seizures that had kept me awake for one year. I kept increasing my dose to keep the brain seizures in control until I ended up on 8 mg. of Klonopin a day.

When I came off Vicodin in April of 2004, my doctor told me to also stop the Klonopin!!! I was afraid of having brain seizures so I tapered quickly but not all at once. I tapered from 8 mg. to 3 mg. in 15 days and was wondering why I felt like so strange. That's when my cough started, that I still have, and I ended up with multiple other conditions and problems from the taper that was too fast.

I found a benzo forum one year ago, learned the truth, and have been slow tapering the rest of the way. I'm still on quite a high dose, 0.9 mg.

My main symptoms have been a crico-pharyngeal spasm, coughing from that, and unrelenting nerve pain all over my body which has kept me from walking much. I sit most of the time.

I hope to be benzo free in about one year, maybe slightly more. My faith has kept me going.

Ivy

It's difficult for me to know exactly where to begin, but I suppose I could start by writing that I have been benzo-free since the beginning of March of this year. The decision to stop my benzodiazepine use was one of the best I have ever made, although the process of tapering and withdrawal was one of the hardest experiences I have gone through.

I had my first panic attack when I was seventeen years old and truly thought I was dying. The doctor I went to was an old general practitioner and he prescribed Valium. I had a basic idea of what it was because I had a friend whose Mother had a "nervous condition" and would inject it into her thigh when she had one of her "spells." The thought of that and the idea of becoming dependent on a medication caused me to tear up the prescription and I never went back to that doctor.

The next few years were spent having children and enduring the occasional panic attack. I simply accepted them as a part of my life and tried to work around them. Panic disorder, like almost everything, is cyclical and when I turned thirty I began to have more and realized that I needed to get some help. My family doctor referred me to a psychiatrist and after my first visit, I left with a month long supply of Paxil, which is an antidepressant in the SSRI family that can sometimes help people suffering from panic disorder.

I took Paxil for the next six years. The first couple were fine; rarely had a panic attack and the side-effects seemed tolerable. The last four years were horrible! The medication stopped working and was having a paradoxical effect, so I was having more panic attacks than ever. My psychiatrist suggested adding Effexor and that's when I decided I had had enough. I went back to my family doctor and told him that I wanted to get off of Paxil. He agreed, but prescribed Xanax to help with the withdrawal (that doesn't exist) and I started tapering. It was very, very intense. I'm sure I would not have been able to have success without Xanax. Then it was time to get off of the benzo. I did not know what I was in for. I kept lowering my dosage and feeling so sick that I thought there was something wrong with me. My doctor just kept writing prescriptions for ninety pills at a time, which enabled me to have it on hand and sometimes take a little bit more without realizing that I was undermining my efforts each time I did it. Finding a forum where I felt accepted and comfortable combined with switching to Valium (how ironic) to finish my taper made it possible for me to see that I could have my life back and even though I lost some time, I'm a stronger and, hopefully, smarter person because of everything I experienced.

~ Ivy

Pete

In June 2003, out of nowhere I had a panic attack driving down a freeway. Following on from this, I was prescribed Xanax. A 'harmless' drug I was told by my Dr., that was not addictive at all...

After 3 months of taking Xanax I decided I wanted to quit. The drug was not taking away my anxiety, and in many ways I felt worse since taking it. I stopped suddenly, cold turkey style. A huge mistake. I experienced a night of terrors, panic attacks and hallucinations that was beyond anything I have ever experienced before. Going back to my Dr., I explained I wanted him to wean me off this drug. He refused, saying "I needed to be on it for at least 6 months". It was then I decided that I would have to do this myself.

Over the next 3 months, I halved my Xanax dose every two weeks until I was clean off it. My withdrawal symptoms were minimal. But this rapid taper soon caught up with me once I was free of the Xanax. Over the next few months, I suffered from extreme levels of anxiety, agorophobia, feelings of terror / impending doom and strong sensations of unreality. Suicidal thoughts were often my companion. There were days and nights, where I thought I was one step away from insanity or death.

It's been through the support of God, my lovely Wife and my friends here, that I made it through this ordeal. Soon I will hit my 'year free from Xanax' anniversary. I still get bouts of symptoms, especially feelings of unreality and fear...but things have settled down.

I know by sharing our stories and supporting each other, great comfort and healing can give relief. If there's one thing I've learned from this experience, it's the re-assurance that 'we are not going crazy' is at times so very very important.

God Bless

Pete

Donna

I have had anxiety all my life. I did not realize what it was, just that something was not right.

I Guess I handled it the best I could until about 15 years ago when I started having anxiety attacks. That was when I went to the doctor and was prescribed 1mg Xanax twice a day. I took my first pill and felt drunk, high etc., so I did not take it for a while. The attacks continued, so I was then given 0.25mg tablets to take a few times a day. I can remember breaking them in half, and taking them only when the anxiety was bad.

For several years I took them that way, never realizing that I was suffering from tolerance withdrawal effects, and was not 'me'. I then stopped altogether for 6 months. I did not feel well, but not horrible either; I was in withdrawal, but did not know it. My doctor kept insisting I NEEDED them, so I started taking them everyday. I was always afraid of them, so cut them in half. This went on for a while and tolerance set in, but again I thought it was just me. They tried to up my dosage; I was on 2mgs a day. I refused and instead lived with tolerance for a few years.

I decided I did not want to take them anymore, and tried to quit quick, with doctors handing me several SSRI's like they were candy. What a nightmare! I finally started a taper and got down to 1mg/day, and was switched to Klonopin at 0.75mg. I tapered from this in 10 weeks and jumped off at 0.25 mg. DO NOT DO THIS. I made it through five months and was then put back on it. I took a 0.5mg tablet and cut it into 4 pieces, and tapered from that in 3 months.

I became drug free for the second time June 10, 2004. I will never take another benzo. If I suffer from anxiety my whole life (which I do doubt now because I have learned so much through this); I will deal with it, and learn to handle it in a different way.

This has been a learning experience and so much positive has come out of it. I have learned to deal with my anxiety along with the issues that cause it. Patience and time play an important role in recovery, along with diet and exercise. But this all takes TIME. Without my friends here I would have not been able to travel this road and I love them all. Now we are here to help you.

Thanks for letting me share.

Donna