Success Stories

We love sharing success stories and welcome yours if you have one.. or rather WHEN you do, since it is only a matter of time! Here are some sent to us from kind souls who want to share, encourage and reassure. Keep trusting that you WILL heal!  Know that This too, shall pass…

We Survive and We Win

In 2001 I went to my doctor complaining of indigestion and gastric reflux. He did all sorts of tests but couldn’t find anything wrong. He said it was due to anxiety and prescribed Ativan. It seemed to help in the beginning but then I began to feel ill all the time. He told me to stay on it and increased the dose. I still didn’t feel any better. I started having panic attacks, couldn’t sleep properly and other side effects that I didn’t like. By the time I came on the internet I was on it for 6+ years. I found this site when it was called Benzo-Wise and contacted Bliss Johns. She said she couldn’t give me advice but told me to get hold of a copy of something called the Ashton Manual, take it to my doctor and discuss what could be done. She said if I decided to taper to make sure I didn’t rush it and that I was comfortable with how I was reducing.

Anyway I tapered over to Valium staying at 6 weeks for each dose as I reduced.  I had problems – the classic symptoms that tend to appear – some scary and some I could live with.  I would feel my adrenaline rush would pace up and down. I was in pain most of the time. I mean everywhere, sometimes it would travel around. My hearing, my vision, tasting, smelling — all my senses were distorted, my memory left me, I could not think or make sense of anything and I was scared of everything. I felt like I had gone completely crazy. I don’t want to scare you by writing everything that happened so let’s just say it was so frightening, it would have made a horror movie seem like a romantic comedy.  The nightmare continued for around 10 months and all this time I didn’t have any windows.

I was very worried and wrote to Bliss every single day saying I wouldn’t get better and she would reassure me. Every day she reassured me and told me to keep holding on.  I kept the Benzo-Wise book under my pillow to read because most nights I hardly slept. It was difficult not having windows. My agitation was so bad I couldn’t focus on anything. Never meditated in my life but I gradually started breathing exercises and would listen to meditation CDs, buddhist and hindu chants and similar stuff. I was very agitated so sometimes I would be pacing while listening. It was weird but helped me a lot. Sometimes a line from one of the chants or meditations would stick in my head and replace the repetitive thoughts I was having. That was powerful and helped me to cope better.

I also started telling myself positive things like I was getting better and that I was healing. Even when I didn’t believe it and was feeling like hell I would say until it. I printed off the emails from Bliss and read them over and over. In the book it talked about what you focus on magnifies so I didn’t research any benzo stuff or compare notes. Sometimes I would give in and lurk on a forum but I mostly protected myself from anything I felt would not help me.

At the beginning of the eleventh month off I noticed the symptoms going one by one. Within two weeks most of them were gone. They never returned. Bliss asked me to tell my story because those of us who heal quickly disappear and this is why there are ones about long withdrawals. LOL True!! So here I am telling anyone who hasn’t tapered yet that it is possible to get better early o’clock. But even if it’s taking longer man we all get there in the end. If I could give one bit of advice it would be to try one or two breathing exercises.  I swear this is what helped me to calm down. Breathing is not meditating. It’s the one thing we must do to stay alive and something as simple as noticing it going in and out of the nostrils is pretty powerful.  Withdrawal is scary but in the end we kick it, we survive and we win.

I was prescribed Ativan/lorazepam in 1975 for general anxiety disorder. I was in the wrong job and in hindsight simply should have left; that would then have been the end of the matter.

My GP informed me that Ativan/lorazepam was safe to use and after several months asked me to start reducing the dose down to zero. I managed to get down from 3mg daily to 1mg but found that subsequent cuts produced incapacitating withdrawal symptoms including depersonalisation, a feeling of unreality, tinnitus, hot flushes, photosensitivity, nausea and significantly increased anxiety. I had not experienced these symptoms prior to taking Ativan apart from moderate anxiety.

I could not function or go to work under these conditions and so continued to take about 1mg daily, which a succession of doctors prescribed for the next 34 years, mostly on repeat prescriptions.

Over this period of time I continued working in education and came to the conclusion that I suffered from anxiety and needed the medication. I did not increase this dose and used the minimum amount to avoid discomfort. I had repeated attempts at coming off but the withdrawal symptoms were simply too crippling.

In 2007 my GP suggested that I should try discontinuing again but the only guidance he gave was that maybe I should switch to diazepam as some patients found it easier to withdraw from, and that I should do it slowly.

My GP did not give me enough information to ensure that my withdrawal would succeed. I realise now that this information at a minimum should have been a withdrawal schedule including an equivalent dose to switch from Ativan/lorazepam to diazepam including what period of time this should take and at what rate to taper; a tapering schedule for diazepam; an indication of withdrawal symptoms I might encounter and their possible duration and; a source of support and advice during all the above.

I consequently tapered far too quickly, did not substitute enough diazepam and quite suddenly went into what I now know as acute withdrawal; one day I was relatively fine, the next I was suffering over forty withdrawal symptoms which then persisted with full severity 24 hours a day for the next 18 months while I tapered to zero and continued for nearly a year after complete withdrawal.

These withdrawal symptoms, none of which I had experienced before included constant sleep disturbances including persistent nightmares, waking in terror early every morning, feeling frightened and terrified all the time, feeling I was controlling my body like it was not part of me like operating machinery, loud constant tinnitus,  extreme light sensitivity and a perception of colours changing, feeling that everything including was unreal or dream like, audio distortions like being in an echo chamber or like listening through cotton wool, hot and cold flushes, crushing headaches like someone is squeezing your brain really hard, a tight band round head, pressure in the head like it will explode, visual distortions like the ground and surroundings moving like liquid, breathlessness, intrusive unwanted thoughts, retching and nausea, muscle aches, cramps, heavy limbs, burning sensations in muscles, chronic fatigue, involuntary weeping, agoraphobia and claustrophobia, panic attacks and palpitations, constant agitation, rage and anger with bouts of screaming obscenities, loss of appetite, dizziness and loss of balance, bloated stomach, frequent urination, blurred vision, no concentration, confusion, inability to perform simple tasks or plan things, comprehension problems, spontaneous itching feelings all over body, feeling of complete hopelessness, dry mouth and metallic taste, restless legs and muscle twitches, emotional blunting or the inability to feel, flu like symptoms with sore tight throat, jelly legs feeling as if they will collapse under you, short term memory loss, unfounded thoughts that something is going to happen, hypersensitivity to touch, loss of balance and finally suicidal thoughts caused by all the above.

Not everyone will experience these and some people manage to withdraw with little difficulty. It depends on dosage and length of time on them, so do not be put off withdrawal by reading these symptoms. However, if you are one of the unlucky ones there is no way through but to endure these but it must be realised that they are symptoms caused by benzodiazepines and do eventually fade in most cases.

Luckily, my partner found a website providing support and advice at www.benzo.org.uk and from this I started to realise what was happening; I also realised that many other people had become damaged by prescribed benzodiazepines as well.

On this website I read the Ashton manual; the work of Professor Ashton on benzodiazepines is definitive worldwide and she developed the successful diazepam taper. I also found supportive helplines such as the Council for Information on Tranquillisers Antidepressants and Painkillers, The Bristol and District Tranquilliser Project, Oldham Tranx and BAT (Battle against Tranquillisers).

I also read two very helpful books, Benzo-Wise by Bliss Johns and the Benzo Book by Jack Hobson-Dupont.

I am now a year and a half off benzodiazepines and although I still have a few lingering symptoms, I am greatly relieved to finally be free of addiction. It is apparent now that I have been on this medication completely unnecessarily for 34 years and that the only reason it was prescribed was to maintain a chemical addiction caused and maintained by doctors. It is also evident that these doctors mis-prescribe and over-prescribe psychotropic drugs, leaving people like me on them for years, and then do not know how to provide safe withdrawal guidance as they have little understanding of them.

I have now recovered significantly and if anyone has any doubts regarding withdrawal I can only say that deciding to endure the pain I went through to achieve the happiness I am now experiencing was worth it.

John Perrott

National Benzo Campaigner and Researcher for the All Party Parliamentary Group for Involuntary Tranquilliser Addiction   www.appgita.com

Judith’s Story

I’m finally benzo free after years moving in this one direction. I started tapering off of xanax in 1997.  For years I have been diagnosed with panic disorder and agoraphobia. I didn’t even start to truly connect the dots until I was nearly done with my taper. The xanax really did cause the agoraphobia and panic attacks.

I had muscle pain and joint pain and weakness. I had weight gain and intolerance to exercise.  All the time I thought I was ill but now I know that it was inter-dose withdrawal or protracted withdrawal from the couple failed attempts I made to get off the drug.

At a high dose I had very odd behavior and that definitely played into my going up so high in the dose and to me staying on the benzos. I won’t even go into how damaged my family got.

I reduced from 10 mg xanax to zero in four months.   It was unbelievable how sick I got. I reinstated back to 1 mg and slowly moved up to 3 mg and I somewhat stabilized. After about 18 months I felt much better so I continued my taper from 3 mg to .25mg xanax.

Something went south in my life so I had to go back to work or lose my house. I worked full time while I remained at .25 of xanax for several months. I lost a lot of weight because I refused to eat. I was incredibly sick.

When I first started this journey, I had really no clue what a computer was. Even without outer influences, I still was able to realize that the xanax was my problem and that I didn’t need to take it anymore and that it was making me so sick.

I journaled daily all that I was going through. I was very detailed and insisted that antibiotics at one time and a cortisol cream at another time gave me mega setbacks. No one believed me but I knew it was true.

It would be another couple years before I had contact with anyone else going through withdrawals. Once I got a computer and went online, all that I have gone through was validated as I met several more people who were going through the same thing.

Eventually, after much illness at .25 mg, I went back up to 1.25 mg xanax and when I stabilized, I went to school to become a massage therapist so I can finally work out of my home and get off the benzos. I also studies relaxation, positive thinking and meditation and practice this each day. This would turn out to be saving grace for me once I hit acute withdrawals.

Everything went smooth until the economy collapsed at the end of my taper. So off to work I went again. This time it was easier because I was working in a calm environment, doing massage and not working at a busy retail store. Also I’m sure that switching to a long acting benzo made a world of difference for me. For me, not much compared to trying to dry cut off xanax.

Everything was manageable until 10 days after my last dose. I don’t know why, but I thought the worse would be over once I was off the benzos. At this time, I needed to take 4 months off of work. I was home alone and running my home and our small apartment complex while my husband was living and working far away.

The first 3 weeks was the most horrid and hair raising experience I ever had. Somehow, the house didn’t burn down, none of our many animals or fish in aquariums died and neither did I.  That was a miracle.  My doctor called my husband and told him that I was sick and should not be alone.  It took 3 weeks for my husband to get home.   Then he had to leave again and it took him another several weeks to get medical leave from work (FMLA).

If I made it through that?  I can get though anything.  The whole experience of the withdrawals, although it was so hard while going through it, has changed me for the better forever.  One a the few awesome positive changes in me is that now I don’t worry about whether or not I can handle an emergency.  I can.  Problems came up with tenants and my pets, I handled everything.

Most of my friends, and I thought I had many, they disappeared. That was a very difficult thing to cope with. Very few, two people actually checked up on me and they are forever my heroes.

I had every symptom on every list I ever found. I can go into details of the nightmares I went through but if you are reading this, you already know.

One year off of benzos and I was doing much better.  Actually driving on the freeway again and flew to San Diego to visit friends.  I went camping to celebrate one year off of benzos then decided it was time to get off the beta-blocker.

That was in many ways harder than the withdrawals I felt from benzos. I didn’t expect that and it was depressing being so sick like back to square one again.   Now it is almost one year after my taper off Inderal (beta-blocker) and I am finally getting back out of the woods.

Very little remains of all those symptoms. I was starting to doubt I would ever get better. It took me so long. I am not 2 years off benzos yet and I feel I have maybe another year to heal but I feel so much better now.

The healing I recognize most is that I am not living so deeply within the misery and constantly trying to survive.    These days I often wonder “what just happened?”

I’m here to tell you that I was 25(+) years on benzos.   Half of that time I was on a very high dose.   I had every symptom on every list I ever found.   And I recovered.   I feel pretty good right now.   I’m still healing but I feel good. Recently, I was kicked off of my permanent disability that I was placed on almost 20 years ago while on a high dose of xanax.   When I found out that I lost my disability, all I could do was laugh.

I’m not disabled anymore.

Please follow your heart.

Judith

A Note From Al

I suffered with terrible symptoms for over 4 years and I almost gave up.  I quit cold turkey off xanax, valium and effexor and had awful obsessive thoughts, paranoia, the burning and pain was a nightmare because I had it all over my body, nightmare head pains which were the worse, muscle spasms, electric shocks, digestive problems. I cannot name all the symptoms because had about 80 in all and they were very intense. I was confined to bed some of the time and house bound for the rest of the time. I didn’t have the windows like some people do, it was hell 24/7.

I came here to tell you folks out there that you must never give up. If  I healed, anybody can. I did try supplements, green drinks and other things but they did not help and i think made me worse. I stuck to a bland diet, no vitamins, no alcohol, no caffeine and no sugar. These things rev up the system so if you are in a bad way like i was don’t take them.

I haven’t had any symptoms for months now.  I feel 100% recovered and it is a great feeling!!  Hang in there. Don’t give up, don’t give up, don’t give up.

Al

Rachel’s Letter

Dear Bliss,

I started writing to you more than three years ago when you had the old ‘Lights’ blog. I was off xanax and valium for almost two years and I was in hell. My doctor first prescribed Valium for menopause symptoms after I had a hysterectomy,  and later Xanax when I developed anxiety due to Valium tolerance… go figure.

As you know, many times I felt I wouldn’t make it. My doctors told me my problems had nothing to do with the benzos, it was anxiety due to the menopause. They offered me more drugs including  antidepressants. I am a single mother but my children are grown up. They ran out of patience with me and in the end, hardly kept in contact. Now that I am better they are angry with the doctors and I think also angry with themselves. But that’s water under the bridge.

I did not have many windows. Much of the time my symptoms were constant.  I spent a lot of time in bed. I had no energy, a lot of pain, my digestion was whacked and the psychological symptoms were horrific. I had awful unwanted obsessive thoughts, paranoia, my head felt as if someone was sawing it in half. The muscle and joint pain was bad and the burning was unbearable at times. The head pain made sleeping almost impossible. I didn’t know a human being survive on less than 3 hours sleep each night for  two and a half years. But I did! : )

At one point I was so desperate to heal, I kept trying to find other reasons for my problems. I was tempted to believe my doctors and doubt myself. Your website helped me to keep focus and I can’t say enough about your book. I read it every day. Thank you Baylissa. You are an angel.

I was on Valium for over a decade and Xanax for seven. How I feel now is amazing. I still get emotional when I think that I suffered for so many years. When I think about it, I was in tolerance withdrawal for years and post-benzo withdrawal for over 5 years. Don’t be discouraged if you read this. I met many people along the way who healed long before me. Some took months, some took 1 or 2 years. My situation is different. I was taken off quickly – almost a cold turkey and I was on the drugs for a long time.

Do not give up hope. Benzo withdrawal is not a pleasant experience but we do heal. I will be honest and say that many times I doubted whether I would or not. I have lost many years of my life – all spent in a tiny apartment. I had no money and life was a struggle. But life comes in cycles. When you get down the way I was, the only way is UP. When I first read about affirmations on your site I thought it was a lot of new age nonsense – sorry, but I did! LOL  Now I am an expert affirmer. I used them to keep me company when I was stuck on my own. They made a difference and helped me to cope. Thanks again, Baylissa.

My life is wonderful now. Having survived the benzo nightmare, I feel confident about my ability to handle difficulties.  I met a handsome, kind, gentle guy and we are very happy and in love. Benzo withdrawal was tough but it taught me a lot about life and what is of real value. I used to take so much for granted. Love your family, be thankful for everything – the food you eat, the clothes you wear, the roof over your head. Most of all, Love yourself. Treat your body and mind as if they are precious because they are the most precious gifts of live. Stay strong. Rachel xxxxx

Annie’s Story

Although each recovery process is unique, it is good to hear when someone in protracted withdrawal has had a breakthrough. Annie had terrible burning sensations, obsessive thoughts and insomnia which all surfaced  during her taper more than three years ago. She never had a ‘window’ of clarity and all these symptoms had been relentless. I recently received an email from her. Here is what she wrote (shared with kind permission):

“I gave up on ever being able to sleep properly again. Never had more than 2 hrs since coming off Klonopin 3 ½ years ago. I was always agitated. I had two awful thoughts that stayed with me the whole time. I felt I would have them forever. The burning was so intense all I could do sometimes was lie in the tub in cool water. It would make it bearable for a while. I cried every day. Monday I noticed the thoughts were gone, now the burning is gone and last night I slept for more than 7 hours.

I am crying now but this time it is not because I am scared or sad. I feel like this is a rebirth. It is taking time to sink in. This is a miracle. I refused psychiatric treatment because I knew it had to be withdrawal. I was taking Klonopin for anxiety and they told me the anxiety came back and this is why I was having the thoughts. When my doctor said maybe I have OCD I was scared. Now my mind is quiet for the first time in years. I am in shock. This is awesome.”

This is wonderful news for all of us! Thank you Annie. If, like Annie, you have been waiting perhaps with no ‘windows’ or signs that your recovery is progressing, I hope this has helped to allay your fears.  The nervous system needs time to recover and I guess for us, it’s all about patience.  Sometimes I swear that those of us who have been ‘given’ the withdrawal challenge have signed up for extreme lessons in patience!

Tim’s Breakthrough

Tim is now in his third year of withdrawal. One of his symptoms was a constant buzz in his head. He described it as feeling like two drill bits on either side of his head were drilling into his temples. He felt as if his nerves were ‘jumping’ inside his head. Like Annie, he has had a remarkable breakthrough. This is what he wrote (shared with kind permission):

“…my head was quiet and it continued to be quiet until this morning. If I were to characterize it, I would say something like “usually the benzo symptoms feel like they are in the driver’s seat of the car and I’m in the back seat. For perhaps the first time in a long, long time, I was in the driver’s seat and the benzo symptoms were in the back seat”…”

This is welcome and wonderful news — more reassurance for anyone who has had bizarre symptoms for a prolonged period. Pardon the cliché but there really is a light at the end of the tunnel!

As his symptoms persisted, Tim devised a wise, effective coping strategy which he has permitted me to pass on.

“I’ve learned recently to not bring my expectations to the table regarding recovery. And I will continue with the steady focus of being the champion, despite whatever life may bring to me. But I am encouraged and find I’m watching with great interest to see what comes next. It’s been a long time since I’ve had a window, rather than a wave. But I’m hoping that I see a door opening before me — and that I can walk right through it to the other side! Whatever happens, God will give strength to deal with the situation.”

Tim has poignantly articulated how just a change in approach and attitude can make a positive difference to the way in which one copes with the recovery process. Thank you Tim, for this profound insight.

Charlotta’s Story

Charlotta was put on 0.5 mg Xanax three times (tid) daily. It was prescribed for bereavement-related anxiety. She quickly developed a tolerance (when more of the drug is needed to be effective) and the dosage was increased. This kept happening over a period of 6 years until she was taking 8 mg daily. Her withdrawal problems began during these periods of tolerance and she thought she had developed a serious psychological problem.

When her doctor stopped increasing the dose and tolerance withdrawal once again set in, she got her husband to check her into a mental health institution. They stopped her medication without tapering. What Charlotte experienced during the cold-turkey detox would be too disturbing for me to write here. As you can imagine, it was extremely traumatic for her. She was faced with every conceivable symptom and more. It was only after her discharge when her husband found the Ashton Manual online, that they realised the source of her all problems.

When Charlotta first started writing to me, she was 2 and ½ years off. She was experiencing nausea, blurred vision, severe head pressure, head pain, confusion, dizziness, fatigue, restless legs at night, tinnitus, constant muscle spasms in her leg, constipation, benzo belly, burning pains in her leg that would come and go, stiff and painful neck with a burning spine, memory problems, repetitive thoughts, understanding conversations, itchy rash and withdrawal induced depression.

Most of these symptoms came in waves but some were constant. Around 34 months off she noticed that some were beginning to lessen in intensity. This was short-lived, however, and she was hit with a very intense wave of severe symptoms. She described it as worse than any of the previous waves had been.

I was relieved to have received another email soon after the 3-year mark saying that the restless legs, repetitive thoughts and muscle spasms had stopped suddenly. She was, at last, able to sleep for more than two hours each night. Other symptoms persisted but she was beginning to feel much better. At 38 months off more symptoms disappeared and she was left with just blurred vision, dizziness and the itchy rash.

A few months later, at approx. 41 months off, Charlotta emailed to say that apart from the odd symptom surfacing for very short periods, she felt completely healed. Although she was thrown and very discouraged by the severe wave, she kept telling herself that her healing was taking place. This was difficult with the withdrawal induced depression but she could not allow herself to give up hope. She kept telling herself that she had already been through so much, her situation could only improve.

Charlotta’s final email brought tears to my eyes. She sounded so ecstatic. After more than three years of terrible insomnia she was enjoying many hours of sound, refreshing sleep. The silence after the tinnitus was, according to her, “like heaven”. Being symptom free and back in charge of her life was a joy for her. She even joked about her husband not being able to stop celebrating the return of his beloved wife. The best thing for Charlotta was knowing that she did not have permanent damage which was her greatest fear during the whole journey.

I love Charlotta’s story. At the time of our email exchanges I was still having waves of symptoms and so found her last few emails very encouraging. Like me, she and her husband absolutely adore Professor Ashton. They strongly believe Charlotta would have been misdiagnosed and given inappropriate treatment had her husband not found the Ashton Manual.

I hope that you, too, will find this story reassuring in some way. As you know, the recovery process is unique and Charlotte’s unfolded according to her schedule. But just being reminded that we do heal should bring new moments of hope. As Charlotta said in her final email, “There is no way that I have permanent brain damage! My life after benzos is the coolest ever – nothing sucks and everything is great. I deserve a special medal!”

Seren’s Story

Seren was nineteen when she was first prescribed lorazepam (Ativan) for panic attacks. She quickly developed tolerance and the dosage was periodically increased until she was on 10 mg daily.

After eleven years on the drug, Seren began to feel much worse than when she initially took it. She experienced cognitive and other problems and, as she said, “was in a total mess.” Her doctor was reluctant to help her discontinue the drug and she decided to taper off without his assistance. She tapered off over a two month period. She was worried about missing work, was not aware of the Ashton or any other method, and just wanted to be benzo free.

Seren had a very intense withdrawal with just about every symptom conceivable. She refers to is as ‘true benzo hell’. When she wrote to the Helpline she was on her third year off and was very frustrated and quite depressed at what she felt was slow progress. She was still experiencing terrible brain fog, muscle pain with burning, insomnia, high anxiety, mood swings and a host of other problems. She felt that her worst symptom was the terrible feeling of impending doom.

Most of her family and friends were no longer interested in her ‘drama’ which they felt was self-inflicted. Seren said that on many occasions she felt like giving up and was worried that she would sink into a deep depression or give in to the suicidal repetitive thoughts she was having at the time.

Thankfully, in early 2008 she stumbled upon the old “Lights In My Windows” website and for the first time in years, began to feel encouraged. She started doing the diaphragmatic breathing technique and kept taking to herself positively. She wasn’t keen on affirmations but found that positively talking herself through the symptoms had stirred something deep inside her. A will to survive her nightmare was ignited.

A few months later, Seren experienced her first ‘window’ of clarity. She was overjoyed but also quite tentative and still unsure of her recovery. It was a brief window and another wave soon came crashing. This setback threw her off-course; she said it almost broke her completely.

It was also at that time that Seren became more determined than ever to survive. She felt that letting go of the process was important and made the decision to totally surrender. That way, she would be allowing her recovery to unfold in its own time. She started to observe her symptoms without becoming upset. Though they persisted for a few more months, this new attitude made the experience a lot less unpleasant that it had  previously been.

By late 2008 Seren’s symptoms started disappearing. She wrote that she had not wanted to say anything in case they returned. After being four months symptom-free she felt ready to celebrate her recovery.  She still has the occasional re-emergence of the odd symptom but nothing worthy of concern.

Seren is now in her mid-thirties. She lost a lot of her prime years to Ativan but is relieved that that chapter of her life is over. She is happy to be given another change and is carving a new life for herself. What has been her biggest blessing is that since her recovery, she has had no panic episodes or any return of the pre-existing anxiety. She has been using all the coping techniques she learned during withdrawal to cope with her underlying condition and has no intentions of ever again taking medication for anxiety.

This is truly a success story. Thank you Seren, you are a remarkable woman and an inspiration. Like all benzo survivors, you deserve a medal!

If you have a success story that you would like to share with us, please send it to: info@recovery-road.org. Thank you.