Please can you send me your own story of withdrawal from Benzodiazepine drugs. I would love to hear from you. You don't have to be fully recoveredThere is no need to add your real name if you wish to remain anonymous. 

           Thank You Thumbs up

 

As the stories here may be triggering for those who are in early withdrawal and extremely sensitive then please don't read here but move on to the Success Stories.

 

 

If you would like to get in touch with any of the people who write here email me at beatingbenzos@aol.co.uk

 

  

 

Description of the Acute Stage by a Benzo Victim

All I am is a collection of symptoms. As I write this my teeth continue to cut and bore into my tongue and cheeks. A mouth full of blood is something I’ve grown used to. I feel tightness around my head like a cheesewire about to slice my brain into two like it were a piece of Edam. I’m coughing all the time. When I walk the ground feels like a trampoline, soft and flexible but also soft as though the trampoline were covered in sand. The room feels as though it were spinning. Noise is magnified by a thousand, so is movement, so is smell, so is light, so is touch. My chemical sensitivities are raging. My hall was painted two days ago. I thought, despite knowing paint fumes can make symptoms worse, that I could open a window and it would be ok. I was wrong. Each inhalation of air smarts with pain. My throat, nose and ears are all red raw. Burning like they are on fire. I stumble to go outside for air, holding on to furniture as I go for balance. But it’s cold outside and each freezing breath hurts.

I am puffy in the face. Apart from the swelling, I have gained four stone since I started tapering the benzodiazepines. The irony is that being fat is usually linked to a lack of self control. I’ve steadfastly avoided all the food and drinks known to make symptoms worse. Caffeine, MSG, gluten, sugar, the list goes on. If I make a mistake and ingest the wrong foods I’d pay for it in severe symptoms for days. Yet with eating being my only source of comfort during this horror show I’ve progressively got fatter and it’s still happening. My life is moving from bed to sofa and back to bed. I cannot go out. How could I in this state. With my senses being assaulted to this level, a small trip out no matter how small or brief would be, at best, an ordeal. I would not have believed these phenomena to be possible had I not experienced them myself. My body has become my own personal torture chamber.

I do not know how much longer I will have to live through this. There is no way of knowing. I’m told it will improve gradually but there is no way to know. I used to make plans just in case I got better. I was an optimist at the start but I have long since realised that life is to be led not just day by day, but minute by minute. A week seems like a blink of an eye such is the long monotony of my routine. So I log onto Facebook for my only social contact. As I press ‘like’ on pretty images of the dancing groups I used to belong to my limbs jolt, electric shock sensations occur in my head arms and legs. My skin burns like it’s on fire and crawls and itches at the same time. I have tried to keep up up appearances on Facebook that I’m still me. But the truth is there is no space for such a luxury as a personality when all life has become is coping with symptoms. That’s all I have become. A cluster of symptoms and bizarre phenomena that are so horrifyingly bizarre they defy description. The experience I’m gong though is difficult for others to relate to. What people tend not to understand they reject.

During this process which I started over eighteen months ago there has been no let up. I have tried to convey what is happening to others but I was dumped from my former dance group due to non attendance. They thought I could have attended even a few rehearsals if I’d “just tried”. A former friend got angry with me that I would not host a dinner party. I did explain I am not even cognitively functional enough to make a cup of tea without errors. This is something they could not relate to so did not believe possible. And another seemed irritated that I was “still ill”. The fact is the way other human beings have hurtled away from this illness, anyone would think I had a disease as highly contagious as Ebola.

I know that my other friends online going through the same illness are experiencing the same isolation to varying degrees. Our lives are lived on Facebook and we are thankful it exists. Whilst these symptoms rage on there is plenty of thinking time. Looking back at how or lives were blighted by the medication we were prescribed by our doctors. Unable to move forward with our lives due to the disability, caught in this helpless limbo of symptoms, there is plenty of time to see how our lives would have been different if we had not been injured by benzodiazepines.

There was a time, before I had started my taper, when the benzodiazepines were affecting my mood so profoundly that I thought of very little other than suicide. And yet back then, although suffering from symptoms of ‘tolerance’ I had my figure, I could walk, I was bubbly. I have far far more to be depressed about since that time. A cauliflower leads a life more interesting than me! As the amount of benzodiazepines in my system slowly decreased I saw symptoms I thought were intrinsically part of me disappear. The night terrors have stopped, the constant suicidality has gone, the depression lifted. I was getting clear windows of the real me…coming back again. And these results spurred me on during the taper. It felt worth it.

But now in this acute stage there is a cruel irony. Having seen the negative effects of the benzodiazepine medication diminish and even vanish my body and mind are now besieged with the symptoms of discontinuation. Brain injury and central nervous system damage have replaced the symptoms of tolerance to benzodiazepines. I try not to despair, I try to believe that things will get better as I’m told they slowly will, but this is an invisible ordeal. It is isolating, it in incommunicable, it is unspeakable, confounding, ever changing in intensity and seemingly never ending. It is like no other illness or disability commonly known. We struggle to believe it ourselves at times. How could our governments and doctors have allowed the pharmaceutical industry to do this to us? It defies belief that this could be happening but it is. We are an inconvenient truth, suffering to such a degree it seems difficult to understand how governments could have allowed the pharmaceutical industry to continue in this way. All some of us want now is stop this happening to others. That’s the only meaning some of us have left in our lives. So where help and support can be given even if just for our campaign, we’d appreciate it very much, if not for us but for future generations.

Sasha's Story

Firstly , I want to say thank you for taking out the time to read this.

So here is my story. My situation has got from bad to worse,much much worse, without my own consent. I have fully accepted that I will never get my life back and I will never be the same again. I am okay with that.

I am at the stage where I have been seriously thinking about life and death , and what will come with ending it. This is not merely because I want my life back and am fed up and sad that this is me for now but rather because the existential, indescribable and excruciating pain and torture have become uncopable and unbearable. The seconds now feel like hours. It has gotten to the stage where I have been saying to myself ' I am not going to kill myself this second'. My brain is not even receptive to watching tv.

I am angry, and the worse it got, after it being crazy enough, got worse, 10000 times WORSE. And I was not the one who made it worse.

On the 20th January 2016, my whole world fell apart. I had been on Zoloft 50mg for 3 months. That day I accidentally took 2, I went manic, crazy, I lost my mind. I got really scared, and thought, wow if a tablet can do this to my brain I do not want to touch these things. The next day I felt the same so decided not to take. I did not take for 3 days and planned to stop altogether because I was so scared of those tablets.

However, my dad intervened and said I must keep on taking them. I took 1 on the 24th, 1.5 on the 25th, 2 on the 26th, 1 on the 27th and 1 on the 28th . That week I did not take them at the same time and for some weird reason thought I must take more for the missed 3 days doses. I am a perfectionist and Extremely careful. (Have not touched alcohol, healthy, Good person). That week was the start of the end of my life. Literally. Or fighting to survive, hoping.

On the 29th of Jan I stopped altogether. That day my brain went into this weird shock/panic mode. For 6 days I had extreme panic, derealisation, muscle twitches and my brain going a bit crazy but I can say that that was Heaven on earth compared to what I am in now.

On the 4th of February, 6 days later my father popped another Zoloft in my mouth to see if it would make the withdrawals better as I complained of 'losing my mind a bit'. It made things worse and theme me into a complete panic, psychotic mode with a huge panic attack. I look back now and I think it kindled my brain.

The next day I woke up having full on seizures. I was not with it and arctic bizarre. I was sent to the psychiatrist who put me on ativan, that demon. He said "take as needed up to 6mg! Until you get a window". What stupid stupid life threatening advice. I had no idea what these tablets were and did not know anything about the dangers of these pills, at all. I also was not in as rational mindset at the time as I was seizuring all over the place.

I landed up taking 6mg a day, one of the days I took 8mg. After the first few doses I already has withdrawals but did not know WHAT was going on at the time so took more to take it away. My mind went into this weird space, dimensions started changing and the world looked dark and like he'll. I also got this strange pain in my head , a hellish pain.

While taking them I also started to lose my ability to use my hands, couldn't walk and had slurred speech. I also became verbally aggressive. I think I was prescribed an overdose. Also I think I had adverse reactions to the drug. I would wake up early in a panic. I don't think the drug gelled with me. Especially the high dose.

I knew these tablets were not working for me but my dad said keep on taking them.

After three weeks of use, enough to put me into a place I did not know existed, I stopped altogether.

This was after asking for as taper plan but not receiving one.

The day a after stopping. I started seizuring all over the place and my brain went into a state of needles and fire, but very bad. I could not look at anything my brain was in such a state of panic. I was sent to a clinic. I started having convulsions for hours on end for about a week. I almost died.

I was sent home 3 weeks later with different auras in my head. I had sharp glass pains in my brain, the world looked dark, what followed was 4months of hell leading up to this email.

I was sent home on 20mg of Lexapro which I stopped after a month, I was put on Zoloft for a week to see if it would take everything away (I didn't know what was going on at the time) and then forced onto Prozac which I was on for 2 months but then was ripped off by FORCE.

I was in a state I did not know existed, severely brain damaged but worse. My mental symptoms were hell I'm earth and I am sureI experienced seizures for days, I could not read or write or watch tv, I still conclude and seizure and gag automatically to this day, my brain has been on fire, I had days where all I could do was stare at my wall my brain was so in shock, I could not feel the bed covers over me, floors have diluted, no emotions, depression, electrocuted, brain on fire, body on fire, pressure in ears, pressure around head, stabbing pain in stomach, cannot feel the sun, nausea, hot and cold flushes, delirium, catatonic(severe), migraines, senses are amplified by 1000, numbness, weight loss, feels like I am in a soap bubble and dimensions are changing and the world looks like hell, random glass pains over body, no memory, anhedonia, stinging skin, I smell metal, body restless, rage, panic, whole body goes alight in a panic mode and goes on fire and it panics and my brain goes to this weird place, psychotic, depersonilisation, derealisation, dimensions changing a the time, weird head pressures in brain, I literally smell death it's weird, trickling hellish sensations in brain, ice pricks in brain, ice block in brain, heard a drill in my brain, numb brain, complete panic to the state where my brain goes mute and I'm stuck unless I end my life, tight pain in neck, no thoughts running through my brain, acid and lava running over my.brain and body, explosions going on in my brain, the world looks colorless, cannot be around people, feels like I am being poisoned/intoxicated, stabbing pains in brain, agitation, my brain state's would change all the time, severe confusion, so sped up that I cannot focus on anything or anyone else, feels like demons are chasing me, I also go dumb/mute.

After 3 months things did improve but then started convulsing again. And got really scared . I was taken to some people to take care of me. For 8 days days. All they did was strip me of my antidepressant and fed me 10mg valium each night for 7 days and gave me 4 xanax.

I went home and my body felt a bit more agitated and I lost my sleep which was healed ! I could sleep for hours.

From June to July I raged and paced and screamed. Things did get worse. Insane head symptoms. Horror. Demons. Acid. The highest level of hell. Dark. Terror. I screamed. I cried. I paced. I broke things.
This is when things got 1000times worse. My dad fed me 1 more xanax. After fitting and seizuring and going delirious. That night my body felt restless, I got hot. The next day I was pushed to beyond hell. Beyond. Beyond. That is when life and death became a serious question. I slept three hours from being able to sleep for 12. Yes I could sleep again. That one pill damaged me very badly. I got akathisia, my, body went VERY hot and then VERY cold. My whole body was filled with lava , coals, needles, the world looked red. Seconds felt like days. I started to say to myself I won't kill myself this second. It got bad. I didn't sleep. My brain went mute, I could not watch tv, I saw the world through glass eyes, my body aches with a stinging,

Itching, burning sensation. Killing myself became a logical option. My body and head were hot. Baylissa, I cannot even explain. And I was FORCED to take that pill.

I am feeling beyond hopeless as things have got from bad to slightly improving to beyond worse. It cannot get worse. I have hallucinated. Have no concept of space. It's bad. Real bad. I would love to explain to you in person how bad. I cannot distract with anything. My brain is not receptive to t.v., I cannot feel the blankets over me in bed, I see the world through a fire colour, literally. My brain feels hot. The withdrawal as I knew disappeared and got beyond worse.I think a normal person would have ended it by now. I don't think you can call it withdrawal. Life and death became real. I felt surges of burning and beyond fear, like this Burning sensation in my chest and stomach beyond fear and panic. I've gone psychotic it's weird. I sit in the bath and my limbs aren't mine..I'm literally a walking specie from the pit of not even hell, beyond ,with a heart that's beating and I wish it would stop. It wasn't this bad 2months ago.

I am beyond hopeless as things have gotten worse. After I was fighting for dear life to get better. Even after not being on these drugs long and them not even benefiting me.

I feel like I've lost. I feel like I've tried everything to fight, but I've just been forced more pills and now I'm left to suffer, to consider life and death. I don't understand. I've gone. I've disappeared. I'm okay that I've lost everything now. I'm just disappointed that it's gotten worse when I thought things could only get better.

I'm at the end of my rope. I don't know what to do. I feel like I've lost.

Love Sasha Leigh Fagan.

N's Story

Hello,
I started taking lorazepam when my Dad died in August of 2013. I asked my PCP to give me something for my anxiety and she gave me a prescription for 0.5 mgs. She did not tell me that it was meant to be taken for a short period or that there may be horrible side effects if I were on them for too long. So for the next 2 years I kept calling in prescriptions when I ran out. There were a few times when she made it clear she wanted to try something else, for instance she put me on clonazepam for one month and another time she put me on prozac which only lasted a few weeks and i wanted something less agressive. So back to lorazepam it was. I'd say I consistently took lorazepam for those 2 years. There were a few days here and there where I felt I didn't need it but for the most part, it was every day. Every now and then I would take a full 1 mg. Looking back, there were times I would take two pills a day because I felt like it wasn't working. After lots of research I realized I had built a tolerance for it. 
 
By December of 2015 I started to experience dizzy spells, and one night I had my boyfriend take me to the hospital because I almost fainted. The ER found that there was nothing wrong with me and said I was probably stressed and sent me on my way. For the next few weeks I had a few more dizzy spells and I also noticed trouble breathing and a rapid heart beat.One night while watching a movie at home I started to have pins and needles in my arms and legs, this also happened a few more times that month. I also noticed I was experiencing panic attacks every so often, something I had never experienced before. 
 
I went to my PCP and refilled my prescription because at the time I thought it was anxiety, although I was a little worried it was something else because I had never felt like this before.
 
This last visit with my PCP, she said to me- "you know this isn't something you should be on for a long time, it has been linked to dementia for people that take it for a while". I was real pissed she was just telling me this, after being on it for over 2 years. I started to lose faith in her competence on this subject and in early January of 2016 I did a google search on long term lorazepam use and lorazepam withdrawal.Something inside of me was telling me to look into this pill a little further. BOY was I enlightened! 
 
After reading countless websites and forums I realized my body had built a tolerance to the lorazepam and I was experiencing "withdrawal like symptoms". I immediately began tapering. I did this without my doctors help because I was convinced she was an idiot. I started taking my pill every other day. And then quickly I cut the pills in half and took those every other day. And then i cut those pills in half and took those every other day. I did this over about 9 weeks. And those 9 weeks were HELL! insomnia, anxiety, panic attacks, depression, pins and needles in my arms/legs, rapid heart beat, adrenaline surges, depersonalization, irritability, crying out of the blue, feeling like i was bipolar. They all kind of came in waves, some days it was emotionally a bad day and some days it was physically a bad day. I finally asked my PCP to refer me to a psychiatrist a few weeks ago because the withdrawal was so bad. She proceeded to tell me that it probably wasn't lorazepam anymore, and that I had developed a panic disorder. Needless to say, I switched PCPs. 
 
My psychiatrist made me feel better in that I wasn't going crazy. I already knew I wasn't crazy by all the articles and forums I had read but it was nice to hear a professional say it. She gave me gabapentin that was supposed to help with withdrawal. I can't say that it was helped me too much but I am still taking it, with plans to taper off of it soon. I also have stopped taking lorazepam after 9 weeks of tapering. I wish now that I had seen a psychiatrist sooner so they could help me come up with a better taper plan but I can't look back now. I am off of it. 
 
I still experience side effects and from what I read I will continue to for a little longer. But I just had to tell you how much your website has helped me. The inspirational stories and passages are amazing and so powerful. I cannot believe what an epidemic this is, and I knew absolutely nothing about it just a few months ago. We are supposed to be able to trust our doctors. 
 
N

 

Ronnie's Story

 
I was at one time around 1996 taking 5.....2mg of Xanax. ..I got to the point of getting so forgetful. ..my roommate ask me one afternoon..."What are you doing?" I said. .taking my medicine...not knowing I had taken 60 of them..and blacked out...woke up the next day in a hospital..I ask the nurse...Where am I at..She said the Dr will be in..in a few minutes...When he got in my room..He ask me..do you know why you are here..I said no..He said..yesterday you took 60 of your Xanax...had your roommate not been at home..you would be dead...and if you hadn't made it to the ER..ten more minutes..you would be dead.
Your heart would have stopped. ..Needless to say...I changed Dr...I had to ween off..starting 4 a day klonopin 1mg morning ..noon..evening..and night..and every 3 weeks cut back a half till I was able to stop...But..what really helped my..was taking a multivitamin everyday. And extra B vitamins.cant remember what I took for adrenal gland exzlation not sure I spelled that correctly. I would sit out in the sun for atleast 20 minutes...go for long fast walks..to help sweat it out...lots of water..no caffine...and eat veggies..I had to force myself to eat..lots of fruit..that contained lots of water like grapes..watermelon...I was determined...this was NOT going to get the best of me. Going to gym..get in sauna..and steam room...sweat that out of my fat cells and body
.I prayed a lot..I have been off Benzos a long time..It can be a good medication..but "I" think..no longer than one or two weeks..Its not anything we do to get addicted to..your body becomes addicted to it...It was a living hell to get off of..but knew a time would come..and I would be free of it...I sometimes..have panis attaches..and for me..drinking something cold helps it to go away..I know now..there is nothing..and I mean Nothing that will jappen in my life that I would have to take Benzos again..Ever...I am DEEPLY sadden for those trying to get off of them...but please..know that you can...keep telling yourself..I know I can..and will be free of this monster that has hold oh me...Please..remember..You can beat it..Be strong..tell yourself when you wake up in the morning...another day closer of getting this behind you...I pray for everyone in this group to be strong and it will happen..and you will no longer be a victim of this hateful addition. Im sure you all have friends and family that love you dearly..and wish they had the real you...back in their lives..Im tearing up..because I know..what you are going through..Its not easy..but..put your foot down..and say..I will get this behind me..and be free..Please dont give in to it...God be with you and bless you and hold you,help you,guide you through this...much much love to you all...

 

 

 

 
 

Phoenix's Story

 

About 16 months ago I went to a psych ward, handed in my 6 month prescription supply of xanax aka alprazolam, and asked to be tapered off on valium aka diazepam. Instead I was put on seroquel. Had a massive 4 hour seizure. Then I was told mistakenly that I was an involuntary patient and unable to leave just to increase the pressure. The next 2 and a half months I was hospitalized. It was a pretty brutal time. I'm sure anyone going through benzo withdrawal can relate. I was prescribed xanax for 20 years by an unethical lazy doctor for relatively moderate anxiety which I had under control at the time using things like progressive muscle relaxation on a daily basis. The idiotic psychiatrist prescribed me xanax after a 15 minute talk taking no medical history. That was 20 years ago. The last 10 years I was prescribed a massive 6mg of xanax daily (equivalent of 120 mg of valium). I realise now I was in tolerance during that time and pretty much locked myself away in a room and barely ventured out to avoid panic attacks. As I simply couldn't function without xanax and the effect wore off every 6 hours. That's the half-life of this dangerous drug. Thankfully xanax has been restricted to the same level as morphine and methadone in my country as of last year so fewer people will have to go through what what a lot of us are going through. 16 months xanax and all psych med free and all pharmaceutical free I still struggle to manage severe withdrawal symptoms on a daily basis. The strongest are photosensitivity, painful tinnitus, strong pain when digesting food, short and long term memory problems, difficulty concentrating and general aches and pains everywhere. Also benzo anger or rage and irritability is a big issue. I think I'm doing pretty well though. Apart from having any real social life I play competitive sport 3 times a week, study music therapy, ethnomusicology and art. So got my pre benzo life back and more apart from the pain and social isolation. My coping skills now are yoga 3 times a week, tai chi and qi gong weekly, daily exercise, and a very healthy balanced diet. Not to mention as much guided relaxation or yoga nidra as I can find time to do. I was also prescribed nardil aka phenelzine, a particularly potent maoi antidepressant which I was also cold turkeyed from. Anyway that's the story so far. 

 

 

 

Jenn's Story

 
My story started 12 years ago, when I was 21 years old.  I was under extreme stress as I was being both physically and mentally abused by my father.  It had been going on my whole life, but the more time passed the worse it became.  I was trying to put myself through school, so I could leave my family home eventually and get out this situation.  My health had always been sensitive, but it was becoming worse and worse, mostly showing up with IBS and shaking and tremors through my body.  It got so bad I had to stop going to school for awhile, which made the abuse at home so much worse, so I finally decided to go to the doctor for help.  The said my IBS was caused by anxiety and depression, so I was prescribed Ativan.  I argued with the doctor, as I said I didn't want to go on them, I had heard they were addictive.  He said there was zero risk.  It took me awhile to finally decide to take them and they did relieve my symptoms...for about 2 weeks.  I then started to experience high levels of anxiety, a violent seizure and my first ever panic attacks.  A family member told me to go to a psychiatrist she was seeing instead of the doctors, so I did so.  I was told I reached tolerance very fast on the benzo's, so I would have to be up dosed.  I told her I wanted off them, but she told me once you start on benzos, you have to stay on for life.  And I believed her.  And I believed her when she said my IBS was caused by anxiety and the anxiety was caused by depression, so I would need an anti-depressant.  Within less than a week I ended up in the ER, with worsening panic attacks and an attempt at suicide, which was very unlike me.  From there I went back to my psychiatrist where she updosed my benzos yet again.  And thus started a downhill journey of my health, both physical & mental.  I was put on various benzos, SSRI's, sleep meds, bi-polar meds, barbiturates, ect.  Eventually she had me up to a dose of 12mg of Klopodin, 120mg of Cymbalta and a host of other drugs.  I experienced seizures daily, very violent, that left me unable to walk, stand or function, everyday was a struggle.  The panic attacks were daily and extreme. I was very suicidal and just hanging on by a thread.  I was experiencing nearly every tolerance symptom known  And the situation at home had become dire.  Through all this time, I had somehow managed to fall in love with a man, that lived half way across the world from me.  We eventually got married and I re-located from my home in America to England.  As soon as I was in the U.K., I cold turkeyed ever med I was on except for my SSRI and benzo.  My doctor in England was shocked to see the dose I was on and the seizures I was having.  He immediately forced me down to 12mg to 9mg, which is still very high.  I really though I was going to die, but somehow I made the shift.  I knew at this point the drugs were the problem and with my husband, I worked out a rapid taper from Klonopin.  It was very fast and I experienced terrible symptoms, till it felt like my body just wouldn't make it through this anymore.  I had to slow down the last part and did a switch to Valium, which made the journey less bumpy.  Afterwards I left a little bit of time, before I tackled the SSRI Cymbalta, which had been an even worse nightmare for me than the benzos.  It was harder to taper from this med.  Again I rapid tapered and had to stop at the end and do a switch to Prozac, which made it easier.  I've experienced the most extreme, severe withdrawal symptoms since, nearly 90 different symptoms altogether.  I've been free of benzos for nearly 4 and half years and free from Cymbalta for 3 years.  I'm currently still very ill and disabled, but nowhere where I was.  The progress has been very slow, but with time the improvements are happening.  Even though I'm still experiencing very bad withdrawl symptoms still, I would never, ever reconsider going back on these meds, as I was much, much worse on them, than I am off them.  At times through withdrawal, I lost all hope, seeing other's getting better before me, wondering why they could fuction so much better, why they haven't had all the symptoms, ect .  I wondered if something was wrong with me.  But I can see as time goes by, that there is nothing wrong with me.  I'm just healing.  Some people get hit harder than other's and are maybe just more sensitive and need more time to heal.  The healing happens though, slowly but surely.  And I have no doubt that thing's will continue to improve, with time.  And no  matter how long it take's me, I'm going to hang in there and beat this. Accepting what has happened and where I am, has helped me greatly. I'm just so happy to have a second chance at life, as I don't think I would have survived much longer if I had stayed on the meds.  If you are protracted and not seeing any improvements even after years of being med free, please hold on.  Thing's will get better eventually, as hard as it is to believe. It's worth the fight, your life is worth it.  Hold on.
 
 
 

Rod's Story

 

Today makes 3 years since my taper from Klonopin ended. I had previously Ct’d off Xanax twice and recovered within 10 days, it was my3rd time getting off a benzo that body-slammed me. I was suffering mentally and emotionally up until last Christmas, that was when I noticed that finally the constant angry, anxious and depressed feelings that had dogged my days that entire time had finally lifted. I am glad to report that although there are definite things in life that I have sadness, anger and regret about, I am able to feel them in appropriate ways and I am also able to choose not to think about them. I sleep pretty well most of the time but still have a couple of nights a week that I wake up and can’t return to sleep.

A few things I’d like to say about my recovery. I'm sorry this is so long, but I felt sure I have some worthwhile things to say. For one, like many of us, my doctor did not really know what she was doing when she drew up the taper plan. It is important to take charge of your recovery from the get-go. I tapered off 2mg of Klonopin in only 4 months, .2mg every 2 weeks, and it was too fast. That is definitely one factor, but of course there are no hard and fast rules in benzo recovery. Insist that you do a cross-over to Valium, and be sure to not rush your taper. There is nothing to be in a hurry about, I can promise you that.

I am a long-time marijuana smoker who lives in a state where medical MJ has not been legalized. It is possible there are strains of weed out there that could be helpful to us but these were not available to me. I found early on that in the day time it would often make me more anxious instead of relaxed. Sometimes in the evening it would help some, but I fear it did more harm than good. Honestly, your brain needs to heal and smoking weed or using any other drug cannot be helpful.

I know for sure just how miserable the early stages of recovery are, but it is vitally important to get some exercise no matter how shitty you feel, for general healing purposes as well as it is a help in sleeping. Once I was able, I was going for long bike rides to tire myself out and that would help me to sleep.

There are a few things you can eat in the middle of the night to help you get back to sleep when you have awoken feeling anxious. For a time I made myself a peanut butter and jelly sandwich before bed and ate it when I woke up at 230AM. That would usually get me a few more hours. I also drink cherry juice before bed regularly. For a while I ate dark chocolate at night, that is known to neutralize the stress hormone Cortisol. Eating a banana in the middle of the night can help. I went 5 months never sleeping more than 3 hours a day before I found out about eating the PB&J.
Tapping, or the Emotional Freedom Technique, was very helpful to me at times. In fact, when I first discovered tapping, I took a big leap forward right away. After that, it was usually helpful to me at least a bit, more than anything else. It’s definitely something to add to your coping repertoire.
The most important advice I can give anyone in benzo recovery is to always be aware that this is not you, ITS YOUR BRAIN AND CNS RECOVERING FROM BENZOS. Always be aware of that at least as intellectual knowledge. Where I made a bad mistake was in not just accepting that this was what was happening in my life.

Constant awareness, realization and acceptance of what is happening is so key, and I am sure my failure to accept my situation prolonged my suffering. I had a major disappointment the year before I got off benzos and wound up taking a crappy job that I hated in a bad situation. The thing to do was to realize my situation with benzos and accept it. Instead of brooding angrily, I should have said to myself “This is an unfortunate set of circumstances but I have no choice but to accept it and carry on” would have been best, but I made things worse by constantly putting pressure on myself to look for another job or be networking or something! I believe all this anguish I brought on myself prolonged my benzo suffering by not allowing my brain and CNS any peace at all. I should have done nothing but go to work and come home and just accept the situation for what it is and wait it out.

This awareness also means knowing that the incredible anger I was constantly burdened with was not to be acted on. I have spent much of the last 3 years brooding over things that happened to me as a child that were totally counter-productive to even think about now, although I could not stop these thoughts. What I could do, however, was NOT to act on this anger. The problem with this is that there were and are many things in my life I am angry about, but to act on any of these feeling s would have just been to hurt people who love me and who are already living in regret at their own actions. There were a few times I lost control of this, but mostly I kept it to myself.

Early on a read about how many marriages break up during benzo recovery and I made up my mind not to take this out on my wife. The good thing is I do not have any long-standing resentment toward her and so all of my brooding about the past did not include her. She had to put up with tons of my anger and dark moods, but I managed to not direct my anger at her and now we still have a happy marriage.

One other mistake I made was in trying to keep up normal social behavior. I was so desperate to get a different job I was always thinking of networking, but I was so miserable and so filled with social anxiety, none of this came to much. Many times I felt embarrassed about my inability to handle social situations, several times I felt like I “geeked out” and probably left the impression of “that guy is a doofus.” My advice is to make no effort at any kind of social life during benzo recovery, and if forced into a social situation you are uncomfortable with, minimize it the best you can and just focus on maintaining your dignity. I have said many times “better to have them think you are aloof than a fool.”

Along those same lines, I think I made a mistake in telling everyone I knew about this and asking for their understanding and all that crap. I am also a recovering alcoholic and cocaine addict, and I can tell you people would love to hear about all the craziness of those drug problems and say “oh how wonderful you were able to beat that addiction” but as soon as you tell them about being chemically dependent on prescription drugs they go “eeeeewwww gross, you are a creep” and shut you off. If I had to do it over again, I would close ranks completely, telling only the people in my immediate circle. Fuck everyone else. You have to draw boundaries and know that very few people are going to care about you enough to roll on this. Think of it as finding out who your real friends are.

I was fortunate in that the things I have always loved in life I was usually still able to get some enjoyment out of. Not total joy, but at least some level of pleasure that made life worthwhile. I developed a mantra that I said to myself over and over “I lead a simple life; I enjoy music, baseball and my wife.” I hope that each person who reads this and is struggling will be able to find something in their lives that they can still enjoy.

Among the things to accept is that there is NOTHING that is going to easily make this situation better. No vitamin, no mineral, no drug, no nothing is going to solve this problem for you. The normal rules of life can be thrown out the window when it comes to benzo recovery. Try to eat right, not too much of this, not too much of that. Get some exercise, try not to put any pressure on yourself to have great achievements. Getting over benzos is a great achievement in itself. Always be aware that your brain and CNS have gone haywire, and that is the reason for your problems. Until they heal, on their own personal timetable, you are going to be miserable. Accept it. Try not to take your suffering out on those around you. The facebook groups are a wonderful source of help, just knowing that you are not alone. At more than 2 ½ years I was still in a state of suffering and seriously afraid this was just how my life was going to be from now on. I have made it through, and you can make it, too

 

 

 

 

Scott's Story

 

Hello Friends. I have been in very bad waves and suffering... I have been really thinking about my recovery and just how far i have come. I have 19 months since i took my last benzo... but my journey of recovery and healing goes back much further. I have been on these pills for over 30 years. I have attempted to quit well over 10 times and failed. But my past failure are part of my recovery and help me today to not go backwards and give up. Friends i really do understand all your suffering and the hardships and pain that comes with recovery. I have lost just about everything except my life due to these pills. I was a computer engineer and worked for very large companies such as Hewlett Packard and two very large Big Pharma Organizations. I lived near the beach in Del Mar, California... These pills took everything away... I lost my home, career, family, income, finances and nearly lost my life. December 2012 i jumped on a airplane with only 2 suitcases in hand to come back to Pennsylvania to live with my parents. You see all of 2012 was spent in and out of hospitals and rehabs and detoxes... including several mental hospitals. I was severley kindled over and over. Seven times alone in 2012 i entered these hospitals to get off all these medications. Everytime i was cold turkeyed and eventually went mad and had to reinstate back on these pills and then the pills quit working again and they turned on me and made me very ill. So back and forth for that entire years cold turkeyed seven times and then back in another hospital to try it again. I felt so mad and like such a failure. I did not know why i could not quit without going mad. Allthese hospitals had people getting off street drugs and doing well after a week. Only I was getting off large doses of benzos and seroquel and ambien. I was such a wreck. When i came home i spent all my time in bed wanting to die. I could not stop thinking about how sick i was and how much mental and physical torture i was in. I could no longer live like this anymore. I did not want to kill myself but i could not live in this pain any longer. I was able to quit benzos in March of 2011 for 6 months in a cold turkey and had to reinstate. I was now seeing that life as i knew it was over. I could no longer work or care for my family. I could not take care of myself and all i thought about was death. With each hospital stay the docters added more and more drugs. More and more diagnoses. I was Bipolar, Major Depressive disorder, Borderline personality diisorder, Schizoeffective, Panic disorder with agoraphobia... I was told i would be sick like this for the rest of my life and i needed to find the right pill or drug to fix my chemical imbalance. This only made matters worse as i had no hope of ever getting better. This only fueled my wish to end my life and not carry on. It wasnt until June of 2013 when ichked myself into my last hospital in Pennsylvania that i knew that i was going to die or i was going to get off all these drugs. I knew if i left this hospital and had to reinstate and go back on again i would die. So for me this was my last chance. I was cold turkyed off of 12mg of Xanax and Klonopin and 30mg of ambien. I shook and convulsed the entire month in the hospital. I came home July 24th 2013 and that is my recovery date. I am still very ill today... I have ringing in my ears and my neck and back are stiff as a board. Severe head pain and eye pressure. Dizzyness and vertigo... My face and body twithes horribly...but know this i was on 64 different medications and was cold turkyed off 800mg of seroquel 45mg of remeron 900mg of lithium... I was given nuerontin, lyrica depakote zyprexa all by doctors to help my withdrawls... None of them worked... They only complicated my withdrawal and made me worse... I was given cogentiin and clonidine and vistaril as safe alternatives... All of them had their own slew of side effects... So what is my point? I see so many people here on these boards being treated the same way and doctors handing out pills like crazy and it really saddens me and breaks my heart. I know there is no pills or cure. The only way out is through it... We cannot go back on the very same drugs that got us here... Trust me if there was a pill that woked i would have found it... I have tried them all... There is no answer in Big Pharma... The only way to heal is to stay clear from all drugs... One day we will all be free from this horrible nightmare and we will be healed... Today i want to live... I no longer want to die... I dont obsess about death anymore... my mind is not contaminated with toxic chemicals anymore... Today i take nothing... Please know thatif i can get free from these drugs so can you... We must not believe our doctors or trust a system that says we are mentally ill and will be like this for the rest of our lives. There is no chemical solution to this problem... Itis not found in a drug or a pill... It will be found in our human nature when we get off all these pills and stay off for many years... Your mind and body will heal..as long as we don not go back to placing drugs or pills in our mouth,,, Please be gentle on yourself and know you are healing... And if you are still tapering hold steady and take your time... but for God's sake do not let the doctors keep adding more pills to your already fragile minds... It omly makes you worse.. We need each other to come together and share our stories and encourageone another to keep fighting and dont surrender... Dont give up.. dont let these drugs take your life.. You will heal once you get off these toxins and stay off... Happy Healing to all and continued success.

 

 

 

Kate's Story


I 'm Kate from Budapest, Hungary, 20 years ago I was prescribed Klonazepam 0.5 mg for anxiety and  I took  it every day. I never increased the dose during the 20 years. Some years ago I developed tolerance symptoms and I thought it was time for me to say good bye to this drug that was very good for me for so many years. I could live a successful life with studies - astrology, Vedic philosophy, vegan life, raising my twin sons, but of course so many problems happened, too. 

 
When I noticed I began to feel unwell feeling severe fatigue, rigid and painful neck muscles I thought there was something bad with my health, It was tolerance withdrawal though.
 
I started the taper according to Professor Heather Ashton's manual and I completed it by July 2014. After that I had 3 awful months of feeling helium head, pressure in my head, agitation, insomnia, anxiety, fear from the unknown,weeping spells, depersonalisation, disembodiment, benzo belly, dizziness, cramps...agoraphobia...I suffered so much that I ended up at the doctor, a pychiater who prescribed me Mirtazapine- antidepressant.  
I could at last sleep well, had a normal time and could travel to places...But after 3 months I did not feel I should take antidepressant..there were side effects so I slowly tapered off it, too and I quit it a month ago.It was not easy! Antidepressants are also very dangerous.
 
However, some days ago I feel rather unwell. Is it a wave, I wonder...? I hope it is not the old illness coming back...

My life is a torment in so many respect. My marriage is very bad, actually it ended many years ago. I had a ray of hope to find a serious partner in January 2015 but he broke with me 2 weeks ago. It is so bad right now and I fear that my illness is coming back...Can it be that it is just a wave? Can it be so serious a wave?
 
 
 
 

Gerrie''s Story

I have been taking benzodiazepines for thirty-four years. It all began when I was prescribed xanax for panic attacks during a rather stressful time in my life. As my anxiety increased my doctor increased my dosage. When I first began feeling ill I was taking six 0.5 mg. tablets daily. I underwent all the usual medical tests which were negative. Eventually I was diagnosed as suffering from Fibromyalgia. More medications were prescribed, nine of which were antidepressants. I was unable to tolerate any of them and continued to get worse. At this point in time I became convinced that I was in a state of tolerance withdrawal.

Due to the fact that the xanax was now ineffective, my doctor stopped prescribing it and substituted Clonazepam  in its place. I was not instructed to taper off the xanax. She failed to prescribe the equivalent dose of clonazepam which resulted in my being a real mess. As this new drug wasn't working I asked to be converted to Valium, a longer lasting benzodiazepine. I was started on 20-30 mg. daily and as required sort of thing. I still experienced no sign of relief and was    getting worse. Finally after searching the internet, I was able to begin to put the pieces of the puzzle together!

 

After reading about the Ashton Manual on line, I began to try to taper off the benzos altogether. In January 2012 I was taking 15 mg. as opposed to 30 mg. I tapered 1 mg. every 2 weeks and as this became more difficult, I reduced the amount from 1 mg. to 1/2 mg. every 2 weeks. As this became harder I reduced my reduction from 1/2 mg. every 2 weeks to 1/4 mg. every 2 weeks. I continued to get sicker and further reduced my taper to 1/8th mg. every 2 weeks. I became so ill that I decided to hold my dosage at 1/8th mg. until I stabilized. It didn't happen! I held from June2013 until January 2014. I then began to taper by 1/8th. and then 1/16th. mg. every 2 weeks. I just didn't know what to do. It became necessary for me to quit my job as well as all other activities. I was no longer even able to shop for groceries or prepare meals. I tried to get help from doctors, psychiatrists, psychologists, emergency departments, counsellors, mental health workers and others. I made 6 visits to emergency facilities and was just sent home. The experiences were extremely degrading to put it mildly. On the advice of a pharmacist, I continued to taper at 1/8th mg. every 2 weeks. I am presently at 4 1/4 mg. of Valium. I have been tapering for 2 1/2 years. This is a living hell! I'm barely able to function. I persevere, ever hopeful that I'm doing the right thing and that one day I will see a change. I am 66 years of age and these benzos have stolen  years of my life. No one believes me, but as many others have said, “you just can't make this stuff up”. I used to be healthy, energetic and always busy. Pretty happy really. Now I am so weak and ill, weighing less than 100 lb. My symptoms are too numerous to mention. Every day is torture. I often wonder if the damage is permanent. Will I heal? It appears that only time will tell!

 

Gerrie,

Feb. 2015

 

 

 

 

 

Betty's Story

Even now it is hard for me to put into words my agony...but a comfort to know that someone is there to listen.

My story started almost 4 years ago.  Up to that time I was a "normal" extremely happy,blessed person.  I am married to my childhood sweetheart ( 56 years Nov 15th.)  We retired from the Navy in 1977 and live in Memphis Tn..

Near the small town where we grew up.We have 3 children, 14 grand children, and 1 great grand child...............Life has been challenging with good times and bad,but nothing I could not handle. I have had back problems as long as I can remember but in 2011 they got so bad I had to see a surgeon  (for years was cared for by a chiropractor , and a primary care Dr. who is also a personal friend.) I  became gradually depressed and in severe pain...all my normal activities stopped which added to the depression ,  then anxiety attacks and panic ,which I did not know what was happening as I had never been depressed  nor had anxiety etc.  PC gave lexipro but to no avail.  All the pain meds caused allergic reactions ( I will add here that I have numerous allergies which started with my first Penicillin shot in 1957 and have grown to cover now almost everything. PC  has no other patient with so many and has come to be very understanding and helpful. Have spent time in Hospital over the years from these reactions ... unable to have med. tests which require iodine and on and on....I was developing a phobia to meds and I guess it is full blown now)I had taken restoril(BENZO @#*??#%) occasionally over several years but not on a consistent basis so I started taking 30 mg every night as it was the only way I could sleep or get any rest.  Pc didn't know what else to do so recommended a psychiatrist  as did the chiropractor both believed I had a chemical imbalance The Phyc put me on Cimbalta (March of  2012) ....no counseling just " here take this " I finally built  up to 80 mg a day and got worse and worse. In July of 2013 had major back surgery...Bone fusion . disc replacement , screws etc.  Morphene worked and for 4 days I had the sweetest rest and relief imaginable!  then to inpatient therapy and Percocet.  Took Percocet for 8 months and successfully weaned of with very little problem.  DEPRESSION WORSENED....PHYCS. SAID TAKE SUBXONE AND THAT IS WHEN I SAID MO MORE........Started seeing a new one and he said you are addicted to Benzo and need to stop but gave me no plan..  Tried Prozac and a few others with reactions within hrs.  or few days .  Finally he said he didn't know what to do.   PC recommended local mental health facility and got a very good Dr. for me..  The plan was to give different meds.  under observation so they could see the reaction without me having to take it 2 or 3 weeks to be able to talk to Dr. I was there two weeks.  First med< Remaron, caused ankle swelling and pain within 24 hours,  2nd med Buspar made me like a Zombie.  He also started slow withdrawal from Restaril. By that time I had been withdrawing from cimbalta and and was off for about two weeks.

I came home from Hosp. Sept 8th  continued Benzo taper and withdrawal  under Pc supervision ....took last  one on Nov 21 4 WEEKS AGO TODAY.  The horror is awful have had Bliss's book about 2 weeks.  Saw PC for reassurance past Wed.  first reaction was "it should be about out of your system,  can give you Trazadone to help sleep" discussed book , declined trazadone, He understood and said the goal will be to give as little med  as possible {I now take synthroid (hypo thyroid for 20 years,always under control till this nightmare started) 50 mg. cozar for hypertension and 0.3 premarin)

Not very coherent I know....I am muddllleing through, get very upset just telling you,  feel so weak and helpless and hopeless And fell guilt because of it.....Before this I have always been the one who helped everybody else.  I was the encourager , my friends and family support me .  My poor husband is a rock of strength but I just keep crying and complaining and I really wish I had never been born.  I am a Christian and have lived a life of faith and trust in God.  He is with me...I know He will not give me more than I can bare....Always I have coped and now I feel like I am loosening my mind...Thoughts of suicide were bad during Cymbalta.....no attempts  and I know I will not do that.

How can I go on in this misery?????I want to believe that I am healing....sometimes I do but right now I am overwhelmed It gets worse as I tell you......The burning stinging pain  My head feels like something is squeezing my brain .  I want to run but I cant.  Cry, I do.   

 Betty

 

 

 

Mark's Story - New Success in Texas (or) Remember the Alamo

 

I’ve waited a long time to write about my success story and the day sure didn’t get here too soon.

 

I was prescribed Ativan after an employee went through an ugly divorce and used that excuse to pull a gun on me several times at work. After the dust settled, I woke up in the middle of the night with a severe panic attack. I called 911 and was in the ER having an EKG within 45 minutes. The doctor said my heart was fine and everything checked out in good order. He then asked if I had any traumatic occurrences lately and I told him of the ordeal at work. He then explained I had a “normal” panic attack and should see my regular doctor for follow-up and treatment. Is there such a thing as an “abnormal” panic attack?

 

I called a local doctor the next day and when I went for the appointment he said this was normal and told me he had just the thing to get me right as rain. He said he had plenty of patients who took Ativan for many years, how safe the drug was and finally wrote me a prescription with 6 refills. That was in 1993. The Ativan felt great for the first week or so. I felt very normal and didn’t have any worries or stress factors at all. A few years went by and of course not knowing what was really taking place, I found another doctor who would gladly write new prescriptions as long as I wore my suit and smiled as I wrote the check….it was so easy without a hint of “you better be careful”.

 

As the years passed and I was ready to get married, I noticed things were not as tight and glued together in my thinking and reactions as I used to be. I went to several doctors and asked them what I could do to quit. All were addiction specialists and told me they would write tapering prescriptions and I would be done in 7 weeks or less. Of course, not a single one worked and I finally thought I just wasn’t strong enough to quit. My fiancé thought I just liked the drug too much to stop. I bought into their notions that I just didn’t have the “right stuff” to make it happen.

 

Fast forward to 2012: A marriage and then a divorce, and then as my heart was still breaking I made a choice to really dig into this benzo nightmare and learn everything I could to see if this was more than I had been told.

I found the Ashton method on the internet and after a few months of research I began to look for a doctor who would allow me full control, one who would embrace the Ashton Method and let me do the tapering without a calendar held over my head. I had to go out of state, but I found one who let me stay in “control mode” while I tapered at my rate, not his.

I started my taper in January of 2013 with enough knowledge that this time would be the last time. I had been switched to Clonazepam in 2005 and shortly afterwards had the VA fill my prescriptions in 2007 up to the last one filled in December of 2012.

I did the Valium crossover in one day without any issues at all. I was on 80 milligrams of Valium daily and it started out very easily. Over the course of many months, I finally finished the taper on June 28th of 2014.

I worked for myself up to about the 12 month of tapering and sure had lots of very ugly days but managed to pull enough energy to get things done. In the 14th month I was pretty much a home recluse, not talking to hardly anyone, barely able to go grocery shopping or even mow the yard. I felt about as useful as a second spare tire on a pickup truck.

Every day I would research the internet looking for anything I could fit into my tapering life and found as many horror stories as I did anything positive about benzo tapering and withdrawal.

I gained weight, felt no energy, felt very depressed and sometimes so angry I’d prefer the company of my pets over my friends and family…no one understood what I was going through…not even close.

I finally got to a point where this was my deal and what anyone thought or said wasn’t my problem….I had enough problems to be concerned with and no longer was concerned if they got it or not.

 

I had doubts right up to the bitter end. One day when I was at .1 milligram I felt like I could go a day without a dose…and I did. The next day I felt the same. Then I thought what the heck….lets go for another day. I was feeling pretty good considering, but I wasn’t ready to hoist the victory flag just yet.

I wasn’t going to let myself think I was truly finished until I reached at least a week or so without a dose..

 

It’s now been over a month and I’m in the healing phase which has its own challenges and mysterious ways, but compared to the time where I was 12 months ago, I can easily see and feel the real healing taking place. Healing isn’t that much fun, but it’s pretty great compared to tapering and waiting to finish.

 

How many times did I read about others success’s.....A lot and then some. I rarely found anyone who was on benzo’s as long as I was.

I think the best way to wrap up my story is to kind of sum up major things I did to stay on track along the way….so here goes.

 

1)     My doctor in Michigan wasn’t there for me except to write refills. He specialized in opiate addiction and I found out he wasn’t a resource of strength for me. After a while I at least accepted that I had the refills coming in without much stress of wondering if he’d stick it out.

2)     I didn’t have a support group and even though I knew about various sites, I just didn’t feel like talking about it too much…but when I did talk about the tapering, I went on and on till I got tired of hearing my own voice.

3)     After a few months I knew this was my deal and no one would really get it. I also found out that knowledge was my best friend. I read everything twice….I filtered out the crap and kept the things I knew were real and valuable.

4)     I did journal every day with my own spreadsheet I designed. I didn’t track everything I saw others were doing…like food, how much I slept, supplements, etc. I knew tracking my doses, what time and a basic “how I feel” was enough for me.

5)     I tried supplements and found out that the longer I got into the tapering the more my central nervous system was ultra-sensitive to anything I tried to add to my body. I can’t advise you one way or another on supplements, but I will say that my whole body was in a kind of shock and didn’t tolerate anything it wasn’t used to before I started to taper.

6)     I didn’t have a lot of physical symptoms I read others had. Sleep was either pretty good or not very good. Towards the end I realized my emotions were shot and very ragged, but I knew that was par for the course and even that would heal up in time.

7)     I got really tired of reading the same old stuff. Time heals everything…..you can do it too….you’ll get through this…blah, blah, blah. They were right; I just didn’t want to hear it because I wasn’t there yet.

8)     I kept telling myself I would do this or that when I reached a certain point in tapering. Hah! I didn’t exercise enough, I ate too much “feel good” food and sat around just waiting…and waiting…and waiting. I’m OK with that part since I felt whatever shape I was in would be correctable after I finished tapering….that part is true as I didn’t really fall apart as much as I thought I had while I was going through it.

9)     I really did this all by myself. I didn’t have a doctor to talk to and guide me. I had no family to lean on and no friends to hang out with (that I could tolerate or them me). I made mistakes and I learned from them very quickly and adjusted along the way. I kept as much pressure off myself as I could…hard to do but I seem to have managed…somehow.

10)  My best supporter was my pharmacist. He’s a really smart guy and knows his stuff about all kinds of drugs. I taught him a lot about benzo’s and he gained a lot of insight into tapering, withdrawals, the mis-information out there and so on. When I see him now he tells me I did something he’s never seen before….he tells me I’m Popeye and Superman rolled into one!

 

I really didn’t want to make this a long story, but I don’t know how to make it short and cover enough bases to help someone going through this ordeal.

 

I’m not going to give you a lot of speech talk with warm and fuzzy words and phrases. What this boils down to is you’ll either do this or you won’t. That’s how it was for me….yes or no.  I don’t want to sound crass or callous, but as you get closer and closer to the finish line, you’ll see for yourself that everything you need to finish and heal is already within your power.

However….without the correct tapering program and information, all the strength in the world won’t get you where you want to be….I had way too many failed attempts in the past with lots of wrong ways already traveled.

I knew I had the strength to do this…I didn’t know I had this much patience to see it through to the end.

I had very few windows as I tapered. I’m still healing up and pushing myself without creating any stress factors of this will happen or this will go away scenarios. I’ve learned how to adjust and keep moving forward. I’m sure I’ll have a different take when I reach a nicer place in healing…. as I should and will.

 

Wrap it up! If you have a minimum of resources you’ll be just fine…..like me.

 If you have good resources, loving family and friends, you’ll be a hero in everyone’s eyes and thoughts.

You may not feel like a hero, but trust me…you are!

 

 

Anonymous Story

 

I am 66 years old, and after reading your blog, I felt that my "Benzo " story mirrored yours in many ways.
My introduction to benzodiazepines was in 1998 when my family physician prescribed ativan, (was not computer savy enough or interested enough to check this drug out before I filled the script), for my , (what I now suspect was peri menopausal ), insomnia.  I too was always a type a personality, hyper, intense, but NEVER would describe myself as anxious. I continued taking 1 mg at bedtime until 2004, and it worked well.  However, I noticed my sleep quality began to diminish and after reporting that to my doctor, he added Temazepam.  This is where my yo-yo dosing began.  I would take ativan one night, then maybe temazepam the next, (rarely if ever taken together),  and this continued for a couple of more years.  In early 2009, I CT'd all temazepam.  Things really started to fall apart at this point.  Lived through several urinary tract infections, spastic colon, extreme muscle tightness...rigidity...aching, burning feet, bout of shingles, unexplained rashes, etc. I did NOT make the connection of temazepam withdrawal and ativan tolerance withdrawal to any of these maladies.  Then in late 2009, because my sleep had deteriorated so badly I thought that the ativan just wasn't working anymore, so one night I simply didn't take it.  OMGoodness!  My mind, my body, my world changed overnight !  I was in acute withdraw and still didn't know it.  I thought it was something I ate.  Then, ( by this time I'm very much online),  the light bulb went on over my head and I started researching ativan withdrawal.  I was  totally flabbergasted and angry at myself and my doctor .  I took the bull by the horns and told my doc that I wanted OFF, and I instructed him as to hiw I was going to taper.  I took 4 months on ativan in suspension to taper off, and I've been off since June, 2010.
I'm sure you quickly did the math and calculated that means that I am 4 years and 4 mos ativan free.
I ammsadly not healed healed yet and still suffer bouts of  extreme fatigue after exertion, muscle tightness/aches/soreness, flu type feelings, insomnia, intense parathesia, and generalized anxiety.  My cognitive skills have improved dramatically and I can go for weeks at a time when everything is very tolerable, but then I get slammed again. I am convinced that hormonal triggers, barometric weather changes , and diet slips are partly responsible,  but I am so terribly tired of fighting and often lose hope.

 

 

 

Val's Story

I was first prescribed Diazepam 2mg tablets, three to be taken 3xdaily in January 2005. Also Escitalopram 25mg and Co-Dydramol 10/500mg. My Diazepam was reduced to 2 x 2mg 3 x daily six years ago. The Escitalopram ‘stopped’ working a year ago. I say ‘stopped’ because I experienced terrific pain in every bone of my body within 20 minutes of taking the tablets and my mind just wouldn’t let me take any more! I was prescribed this medication because I have PTSD. I have all the usual symptoms, nightmares, hypervigilance, disassociation, agoraphobia, anxiety, depression, etc., etc.
I try not to think about how my body feels – but here goes… My hands are shaking as I type, the joints in my fingers are on fire but not swollen, I know what key I want to press but my fingers do otherwise, my wrists are very painful and weak, and my heart is pounding. I want to pull my neck up out of inside my shoulders but my head is too heavy. My mouth is very dry and my eyes feel sore, tired and dry also. I feel as if my back needs a support corset!!! My abdomen is swollen, hard and uncomfortable. I’m sitting but I can’t really feel my bottom on the chair or acknowledge my legs…I know that my feet are on the floor. Mild pins and needles sensations are in my buttocks all the way down to my toes at the moment.
I feel very fatigued. If I were walking from one room to another I would feel very ‘light-headed’, sometimes I lose my balance, sometimes the floor isn’t where it should be when I put my feet one in front of the other – lower than expected! I know I have to eat even though I don’t feel hungry but quite often, almost as soon as I start preparation both arms start jerking this way and that. It’s really frightening if I have a sharp vegetable knife in my hand as I have no control over which way they move and however hard I try to concentrate on opening my hand to drop what I’m holding, it’s as if my hand is frozen and doesn’t get the message. It’s similar with other things…lifting a boiling kettle to make a cup of tea, I can’t stop my arm jerking and I have to be very careful. I spill things and drop things – at times it all gets too much for me. It’s so frustrating!!!
However, worst of all are the ‘jelly-legs’ attacks. Sometimes they follow a nightmare or trigger. I’ve learnt to live with them over the last ten years. It’s not easy but once I come out of them I know that I need to get to the Co-Dydramol as soon as possible as the head pain is excruciating. I get no warning, I’m told that my legs just give way under me and I fall to the floor or ground if outside. Apparently my whole body jerks in spasms and sometimes I cry out. They can last between 20 minutes to three-quarters of an hour. I have no recollection of them only the burning shooting pains that run up the back of my head to my crown and back down again tell me I have had one. When I come out of it I have no feeling in my legs and therefore (if alone) I have to pull myself along the floor to get to my medication. My legs can remain numb for up to twenty minutes and then there may be pins & needles or sharp, short, like electric shocks jumping around inside my legs. Sometimes my calf muscles go into spasm and quite frequently I see my toes turn upwards also. I really can’t describe how painful this is!
Since I have reduced the Diazepam down to 8mg instead of the 12mg I am supposed to take the jelly-legs attacks have reduced from almost every day, down to two or maybe three times per week. I’m convinced they have something to do with the prescribed medication. I desperately want to be free of taking tablets and get my life back. For the past 8 months I have been receiving home visits from my local Mental Health Team and I am learning new strategy/coping skills.

June, 2015

LF's Story

Re Protracted Benzodiazepine Withdrawal Syndrome - Letter to my GP

I have now been bedridden 95% of the time for 21 months due to the above. It has been a terrible experience. I hope that by explaining in writing what has happened to me, you and the other GPs in the practice will be better equipped to help other patients who are withdrawing from benzodiazepines. It might also aid appropriate diagnosis. However, my story really started 40 years ago and I think it is important to go back to the beginning of my story.

In 1975, age 20, I was diagnosed as having myoclonic epilepsy and prescribed 5 mg of nitrazepam. I immediately became hyperactive, working all day and dancing to the early hours in a holiday camp. I lost about 2 stones (8.5 to 6.5) in 8 weeks, returned to pre puberty state and tried to commit suicide. Diagnosed with depression, no connection was made to the nitrazepam. The next 10 years were HELL. In patient / day patient treatment followed by treatment under various psychiatrists. I was pretty well non functional and could not work.  Had to abandon my degree studies. Disastrous marriage to a fellow patient. Muliple suicide attempts. Aggression. Agoraphobia, monophobia, anorexia, compulsive eating etc etc.

At age 30, I started to claw my way back into life. Part time college, full time college, full time work, divorce sadly, and university, graduating in 1994. Worked in research in the NHS for 20 years thereafter. I interpreted this long process as "getting better". I was by then seeing a psychotherapist, who undoubtedly assisted in getting me functional again. However, there has not been one day in the past 40 years free from depression. Unable to connect with my own emotions, I sought refuge in my work and gained great satisfaction from it. I have however missed out on so much in life. Too depressed to have children, for example. Unable to enjoy all the normal things in life, particularly close relationships. 

Moving on to 2012. I joined a new Practice as it was nearer home. Had been with my previous Practice for over 30 years. At my first consultation with  new doctor it was suggested I stop taking nitrazepam. I was not very keen as I was scared this would exacerbate my depression. I had recently taken early retirement for health reasons including depression. Despite my misgivings, I decided to try it. I reduced 1/4 of 5 mg once a month so tapered over three months. I had no apparent withdrawal symptoms nor did I have symptoms of myoclonic epilepsy so I was very pleased. However, I did become more depressed and this lasted about six months. I did not link it to nitrazepam withdrawal but was puzzled as to why it was happening. 

I also experienced almost continuous sexual arousal during those six months and did link that to stopping nitrazepam. Then in September 2013, I was hit with a barrage of physical symptoms which rendered me bedridden for 21 months. The worst symptoms have been numbness in legs, feet, anus, vagina, lasting 12 months. Loss of bowel control during that time. Then unbearable nerve pain in all these areas, lasting about six months. Also continuous head pressure and squeezing sensations inside my brain for 20 months. 

I am still unable to read more than a few paragraphs or watch tv. Short term and long term memory have been very poor throughout these 21 months but have recently improved a great deal. I was unable to use a computer for many months. My concentration is much better now.  

Emotionally and psychologically, I am once again the person I was 40 years ago. I have had no depression since Sept 2013. I am no longer taking anti depressants. I have never felt lonely or alone since becoming bedridden. This is despite the fact I live alone and have seen friends only once a month on average since this started. I am in no doubt at all that this is due to the cessation of nitrazepam. 

All in all, it is a pretty sorry tale. My symptoms are clearly consistent with protracted benzodiazepine withdrawal syndrome as outlined by Prof Heather Ashton, University of Newcastle.

www.benzo.org.uk/manual/


Apart from my very good friends, my main source of support has been the online support forum

www.benzobuddies.org

I don't know how much longer this process is going to take. I expect to make a full recovery. I can now walk for a few minutes outside, limited not by physical weakness but by a malfunctioning brain. Sleep remains totally disrupted. Currently awake by night, asleep by day most of the time.  

Life is too short to look back. Looking forward with optimism is the only way. I would, however, like to think that my story might just help someone else.

Kind regards