Valerie Bell's Story
This is my very long story of benzo problems. The main reason for telling it is to try to help others to come off these evil drugs.
Please, whatever hits you, and for how ever long, even if advised by the doctor, NEVER DO WHAT I DID. Every time you come off them it gets worse and God knows for how long.
Except for one occasion I had never visited the doctor in 42 years but my medical file since I started the benzos is so thick you almost need a wheelbarrow to carry it. I have seen 33 different psychiatrists and doctors as well as addiction specialists and taken every kind of alternative medicine you can think of. The only specialist I have not seen is a vet - well not yet anyway!
I was first prescribed benzos in 1984. In August I had been away with friends on holiday and had a fabulous time except for a few panicky feelings, but they weren't too bad.
On 15 September 1984 we were at a party and I had a really bad panic attack. I also felt quite depressed. I had been on a very strict diet and I think with hindsight this was the problem. I then made my first of many mistakes. I went to see a psychiatrist. Fourteen years earlier I had had a panic attack and a doctor had put me on Ativan which freaked me out. I felt fear, unreality, hallucinations, agoraphobia, deep depression etc from it. I was terrified of this happening again and because in those days we didn't know what we know today I thought it had to be me. I thought I would be put away. Fortunately I was introduced to one of the few psychiatrists that didn't like benzos and he took me off them without too much pain.
For the next 14 years I had a wonderful life, beautiful home, ran my own florist's business, had a terrific social life, happy marriage and lived life to the full.
Like everyone else when life is going well you start to look for problems - something has to go wrong. I started to worry about our financial situation and I felt we were living beyond our means. I started to worry every time a bill came through the door. My mother, whom I adored, had died of cancer and I suppose this also took more out of me than I realised at the time.
Back to 1984. Of course I didn't realise that going to see this psychiatrist was just the start of my problems. I saw him privately because I thought that's how you get the best treatment.
The first thing he prescribed me was Xanax, the worst of the lot I later discovered. He assured me that it was a new drug from America and not a benzo.
Over the next two years he continually increased the dose, I went up to 4mg a day and to this he added a strong antidepressant, Marplan, a MAOI. I continued to live half a life; I was either high or low, had long bouts of unreality which I got used to living with. I suppose after two years of taking this combination of drugs my system had learnt how to cope with them and I more or less levelled out. I went to Australia for a lovely holiday and carried on with life in what I thought was a normal way. This would probably have gone on for years had it not been for our local pharmacist. A new owner had taken over and he pointed out that, in his opinion, these pills would end up killing me.
Back I went to the psychiatrist that got me off them the first time. He immediately sent me for a liver function test and started me on another withdrawal program. It wasn't too bad. I had some bad days but nothing I couldn't cope with. I had the usual hot sweats and my hair fell out in clumps but I managed to carry on a fairly normal life.
During the next 2-3 years things started to go downhill. My feet would go numb; I had unreality, depersonalisation and depression but at least I was by now off the Xanax and the Marplan was down to 2mgs from 8.
It was at this time that along with hundreds of other sufferers we started legal action against the drug companies. We all had to get an independent report on our history of benzo use. This in my case was of course with another psychiatrist. He agreed that all my problems were from the overprescribing of Xanax but he also advised me to come off the last 2 mgs of Marplan. He felt these could also cause problems in the future. He sent me to see yet another psychiatrist in a local private clinic called "The Priory". I went twice a week for about six weeks.
Because my family thought that by paying for the best you get the best, by now we were broke as I was unable to work. They insisted on paying the £200 a day. It is, as you can imagine, a complete waste of money. Every time I saw a doctor that was extra. Most of the other patients had what I suppose are "normal" mental health problems such as personality disorders, anorexia or other eating disorders, etc. No one else had a problem with benzos and I don't think they had a clue what was wrong with me. They had us sitting round in circles discussing our problems and drawing things that made us angry. It was a total waste of money. That all happened over ten years ago and I don't think they have much more of a clue about benzos today. At least for the first time in years I was drug free. I thought this was the end of my problems but how wrong I was!
About a month after this I was at a party when I started to feel unwell. This is where the real horror story starts. I was constantly violently sick and had chronic diarrhoea at the same time. Back came the unreality, the depersonalisation and the depression. My brain was like a computer out of control. Fear poured out of my stomach. I was hallucinating and every nerve in my body jerked and screamed. My heart beat so fast I thought it would come out of my body. I had constant panic attacks, could not sit still, had to walk for miles, continually going behind a tree to be sick. I could hardly see. It was as though I was in a tunnel.
After a few weeks of this the symptoms eased but I was still very poorly so my family once again insisted I see some one else. They could not believe that all these problems came from coming off the drugs. There had to be something seriously wrong with me. Yet another private psychiatrist was called in. Although by now we were in constant contact with people running benzo self help groups I refused to believe that all of this hell was a belated withdrawal from the Xanax.
The first thing the latest psychiatrist suggested was shock treatment. I was terrified. My husband had always said it was the benzos. I think the psychiatrist knew that as well, and I asked her to prescribe Valium to prove the point. Although she was reluctant to do this she gave me a prescription for 20mg a day. I decided to take as little as possible. Steve, my husband, wasn't really happy with me taking any but by then he had had just about as much as he could take. I took what I thought was a small dose (7½mg a day) and after just a few hours I was, to my surprise, completely well again.
We were by now totally broke and living in a caravan. Once again I was feeling on top of the world and when we were offered the chance to run a local hotel we jumped at it. Another terrible mistake - about as stressful you can get. At first I loved it but after a while the withdrawal started up again. It started with what I thought was the flu but soon developed into full blown withdrawal. All the old terrible symptoms came back again. We left the hotel and I took to my bed. I stayed there for months. Again I could take no more and, against advice, increased the Valium to 15mg. Once again I was my old self, running the dog round the park etc. telling myself that this time I would avoid all stress and come off them very slowly.
As we still had no income and I was determined not to go on social security we opened another shop with money an aunt had left me. I thought that being occupied doing the job I loved would be the answer, and, as long as I didn't get too stressed out everything would be OK. Wrong. Four months after opening the shop it all started again. First the unreality returned and I couldn't bear to be with people, and then the rest of the symptoms came back. I had of course reached my tolerance level again.
I was forced to give up the shop and once again I became a recluse, seeing no one for the next 20 months, most of the time just sitting rocking and crying. I became violent and aggressive, smashing furniture etc. I thought I was really going mad this time. Once again the family insisted we call in someone else - again the best that money could buy. I had, by then, managed to reduce to 6mg but I had become totally suicidal. This new psychiatrist convinced us that all the others we had seen knew nothing about benzos, and, that if we stuck with him, he would finally solve my problems. His treatment consisted of my going up to 30mg Valium a day, but this time I must see a cognitive therapist while reducing. I was so desperate I would have done anything. It all seemed to make sense to my family who had always said it was my personality that was the problem. I could never do things by halves and always overdid things.
By now a familiar pattern was developing. Every time I increased my dose I had a few months of normality and then I would go back into withdrawal. We now know that this is exactly what happens to everyone. Once you reach tolerance level you go back into withdrawal. The psychiatrist convinced us that there was an amount you could take to level out and either stay on them or come off them very, very slowly. He eventually got me up to 125mg a day, saying that this was a common amount in America. Our GP had already said that I needed benzos like everyone else needs oxygen so I didn't argue and just took them. Yet another fatal mistake for which I can only blame myself. I just wanted so much to believe him.
Christmas Day was not too bad but by New Year's Eve I was once again housebound. It all started again but I was on 125mg. Needless to say this latest psychiatrist dumped me. Suddenly he was no longer available and when I did manage to get hold of him he just said I must grit my teeth and get off them! Another £3000 down the drain and I was then in a far worse state.
I became very suicidal; I couldn't see anybody or go anywhere. I just stared at the floor most of the time.
I gritted my teeth, as he told me to, and for another 20 months or so I steadily reduced, again getting down to about 7mg.
I then made the worst and most costly mistake to date. We heard through the Internet about a doctor in California who had developed a method of getting people off benzos with a combination of acupuncture and Novocain injections. This dulled the pain, he told us. A lady we spoke to had been to him with the same problem and now she was completely well. The doctor told us it didn't matter how much I was on, so, in order to face the journey I once again, against everyone's advice, increased my dose back up to 125mg, thinking this would only be for a day or two.
The treatment involved coming off almost cold turkey while having a lot of very painful injections. This was in conjunction with taking a lot of Chinese herbs. Within three weeks I was down to 10mg and I really believed this time we had the answer. Anyone who has been on benzos will know what comes next. I hit the floor in a big way.
At the time we were staying with my half sister not far from the doctor's surgery. Unfortunately she was selling the house at the time so I could not take to my bed. We also had our return ticket booked and, because we were only allowed to stay for 90 days, I was compelled once again to increase my dose. I levelled out on 75mgs and, at least for the remainder of our stay (about 6 weeks), I was able to do some wonderful things.
I tell myself that all the money that it had cost my family to send me there wasn't completely wasted - even if that wasn't the idea of going. At least I had had a long and much needed holiday. In order to face the flight home I was again forced to increase my dose to 125mg. For a couple of months after our return I was able to have a semblance of life before it all hit me again. I am now once again housebound and in full withdrawal.
To date I have managed to reduce to 40mg and with the help of friends in the Benzo Group I am determined to do it this time. I have no one to blame for the mess I am in but myself. I was told years ago by ex-benzo addicts that the only answer is to stop taking these evil drugs and this time that is exactly what I intend to do - without the help of all those so called experts that, in the main, are only interested in our money.
I am sorry that this is such a long and rambling story, but it has helped me just to share it with all of you.
Love and God Bless,
Valerie Bell
November 12, 2001
Continuation of my story 2009:
I continued my taper (3 years) which was FAR FAR TOO FAST, I did get off but unbelievably the symptoms got worse. I had total body disassociation, I saw my arm as a twig, I was so unreal, it was unbelievable HELL. I drowned in despair - the despair was like quicksand sucking me in, plus many other new symptoms. My doctor came to see me. He did say it was w/d symptoms and suggested going back on. I tried to survive like this for 3 months but it was to physically and mentally painful for a human being to bear. He told me to go back on 30mg. I did do this but the WRONG way as 10mg at night have been enough. 30mg made life bearable and livable but the main thing that still plagued me was the awful whirring in my head. I have been prescribed countless antidepressants over the years and all had, as expected, no effect. I was offered other drugs for my head by neurologist which I WON'T take.
I was luckily taken under Dr Reg Peart's wing, who set me a sensible taper and was there for Steve and I. The first two years two months of my taper were pretty easy but the last ten months were much harder but livable. I am 15 months off now. I have goodish days, some good days and of course very bad days. My biggest problem is the whirring, banging etc in my head. if I didn't have this I would say I was 70% well. Mentally I am 85% there. My life isn't back to how I would like it by a long way, but we do go to our lovely English Pubs for lunch on better days and I can go shopping in large stores. I cant expect much else after 23 years of benzoes but I have come a long, long way from where I have been. I am alive and sane, with the personality that makes me ME which I lost for years. I am not suicidally depressed and I am looking forward with HOPE to some happy pain free twilight years.
So no matter how bad you have been or how hopeless you feel, if you feel you have lost your mind or are so depressed you can't go on and feel you can't get well, YOU CAN, if you do a sensible SLOW taper, accept your illness, cut all stress to the minimum, and have just a VERY FEW good benzo friends to help you through, you will make it off. I NEVER EVER, EVER believed I would, after 15 LOST years and 7 attempts to get off (2 cold turkeys and 5 tapers) - of pain mentally and physically. DON'T look for a MAGIC bullet. Believe me there is NOT one except TIME. Try not to take other drugs or try alternative meds etc. I have done that and tried EVERYTHING at great expense and no success. I have seen 33 psychiatrists over the years including Prof Lader and none told me what was wrong with me. Shows how little they know.
I have to give a HUGE HUGE HUGE thanks to Dr Reg Peart and especially Una, Geraldine and Debra for always being there for me. All have helped to save my life and sanity. THANK YOU and the BIGGEST thank you to my husband who has stuck by me through all this HELL.
Valerie Bell
January 21, 2009
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