Wayne’s Benzo Story: (UK)
I suffered from social anxiety that started as a result of a work presentation I completely messed up and muddled all my words. The social anxiety progressively got worse, and I eventually got counselling for it after around six months. The counselling mainly involved exposing me to situations I wasn’t comfortable with, CBT, etc. Over the span of a few years I was out doing normal things again, enjoying life.
It was mid-2010 when I developed a constant urge to urinate. I didn’t go to the doctors until November to get “help.” It was then that I was diagnosed as having an “overactive bladder” and was prescribed Ditropan XL. I started the pills and within a few days I felt severe nervousness, shaking, dizziness, a dry mouth to the point I couldn’t open it to speak, and just generally feeling awful. I stopped the pills in late December, right before Christmas.
Christmas morning 2010 at 3am I was awoken with the most intense panic attack I had ever felt in my life. (I had previously experienced panic attacks because of the social anxiety but this was different.) I was begging my girlfriend to kill me; I wanted to die; it felt like I was going to die any second. It lasted around one hour before passing and I went back to sleep. Unfortunately this continued to be a daily occurrence for the next two weeks: Constant panic attacks, and if I wasn’t having those, I would be in a constant state of fear. I couldn’t take it anymore and told my girlfriend I was going to kill myself.
That is when the real hell began. I couldn’t stand it any longer and had to go to the emergency room where they gave me 5mg of Valium. I felt almost instant relief. I sat in the waiting room and they then contacted the “Crisis Team” to help me. They sent me home and within a few hours I was back to having the intense panic attacks again. The next day the Crisis Team arrived at my house, and they had a talk with me about my “anxiety” and prescribed me Zyprexa 5mg and Effexor 75mg, telling me that these drugs would “sort out all my problems.” I had never heard of any of these drugs and trusted them completely.
(At this point in my story, I think it is important to note that only in retrospect, I realize this entire nightmare was happening due to a reaction to the Ditropan XL. Upon researching it, I learned side effects and reactions of Ditropan XL included everything that I was experiencing. Had I been advised of this and waited it out, I would have avoided this entire hellish experience.)
Anyway, I started the Zyprexa the same night that the Crisis Team left and slept for hours. It literally knocked me out cold, but woke up feeling so groggy, almost hung over-like. I started the Effexor the next morning and a few days later all hell broke loose. I was screaming, writhing about all over the floor, and the panic attacks got MUCH worse. I felt like I was losing my mind, going completely crazy. The Crisis Team would come round every day and tell me this was “normal” for starting these meds and that it would go within a week or two. They kept telling me to go for walks every day (I couldn’t) but still I trusted them. This went on every day, getting worse and worse for two weeks until I told them I couldn’t take it any longer. They stopped the Effexor and replaced it with Remeron 15mg, and also added 15mg of Valium (5mg 3 x day as a “sticking plaster” to “get me onto the Remeron”).
I started both the same day they gave it me, Remeron at bedtime along with the Zyprexa. From there I got worse, MUCH, MUCH worse over the next two weeks. The weight was falling off me, I had no appetite, panic attacks all day long and felt completely crazy. Next they upped my Valium to 22mg, but it had no effect on me – it didn’t do anything for me. I started to notice that I was doing things that I’d never done in my life before: I would shower and not know what I was meant to be doing, what to use to wash my hair, and just a general confusion with doing everyday tasks. I told this to the Crisis Team and they brushed it off as nothing. Things just kept getting worse and worse, and I started searching for anything in the house to cut myself. My sister had to bring her office to my house or my girlfriend had to take time off work to watch over me. Any chance I could get when they weren’t looking I would run and search frantically for anything sharp (they had hid all knives), and I just wanted to end this suffering. I’d grab my belt from my robe and tie it around my neck as tight as I could trying to strangle myself, my sister and girlfriend fighting with me to stop me. All the time I would be screaming at them, “Just let me do it, let me die!”
The Crisis Team said I needed to go into a Psychiatric hospital. I arrived there and hated it. I didn’t belong there. I lasted one night and told my sister to come pick me up the next day, and when I got back home the hell continued on and on. A few days later, I ended up in another psych ward for three days this time. Again I discharged myself. The next visit I had with the Crisis Team I told them, “I want off all these meds, they’re making me much worse.” The lady (not even a doctor) said, “Okay, we can take you off everything within a week.” I had been on Valium and other psych meds for two months at this time. I agreed, not knowing any better, and they dropped the Valium from 22mg to 10mg and stopped the Remeron dead.
I thought I’d been through the worst, but had NO idea what was about to happen. I started to have episodes of shaking intensely, tremors, falling over, and eyes rolling into the back of my head, no idea where I was or who my family members were. I would look at them and shout at them “I don’t know who you are!!!!!!” I would convulse on the floor, “come around” and see my mom standing over me, and she would say the words “Get up, you’re just making this up now!” I wasn’t. I couldn’t control what was happening to me at all.
The insomnia started, and since I couldn’t sleep they prescribed me Zopiclone 7.5mg. Akathisia started and I would pace from the moment I woke until I’d take my Zyprexa and Zopiclone and eventually collapse on the bed from sheer exhaustion. This went on and on, constant pacing all day long. I would pace from my bedroom to the bathroom, touch the taps, then back into my bedroom and touch the wall, almost OCD-like, getting faster and faster, collapsing into a heap on the floor screaming, then get back up and do it again. I simply couldn’t stop it. I started to reach for sharp objects again, cords, robe ties, anything I could get my hands on to stop this torture. I would find some scissors and hack away at my wrists. They were blunt so I’d have to dig deep for it to do anything. Felt no pain doing it whatsoever and I had no fear of dying because it was a way out from this constant torment. Weeks were passing by and nothing was improving. Things were getting worse and worse.
End of March 2011, all my family were round for my 30th birthday with gifts. I didn’t recognise any of them, they were strangers to me. I didn’t care about presents. I didn’t even know what year it was, let alone what day. I just went out of the house and walked for what seemed like forever, alone in the dark, not knowing where I was going, and I didn’t care. I eventually found my way home and got a hold of a knife and held it to my wrist in the kitchen. My sister (she tells me) stood in front of me watching her former happy, funny, fun-loving brother about to cut his wrist in front of her. I went to drag it across my wrist and she snatched it from my hand and hid it from me. I collapsed on the floor crying, begging to die, to let me do it, to end this. I couldn’t cope anymore living like this.
My sister phoned the Crisis Team and they said I had to go into another psychiatric hospital. The only one available was two hours away, and I got picked up in an ambulance. My mom packed my bag for me, but nobody could come with me. I was absolutely terrified and had no idea what was happening, no idea who I was, where I was going. I was screaming at the ambulance driver and paramedic that I was mad and to kill me. I got there and waited at the check-in desk with the ambulance crew, shaking, sweating, falling on the floor, begging to let me die. They checked me in and got all my details and wished me a belated “Happy birthday.” I wanted to kill them. It was 4am so they showed me to my room and shut the door. I paced around the room all night crying, screaming, rolling on the floor, but nobody came to check on me. Finally I passed out and woke to a doctor standing over me. He led me to a room where they did blood tests, all the time asking me questions that I couldn’t understand, let alone answer. I paced constantly in the psych ward. Other patients would just be standing in one spot, or doing the same as me. I was sure I was mad, and this was now my life.
A doctor came to me again and said there was a place at the psych ward close to my house, again a two-hour ambulance journey to get there with me pacing the whole time around the back of the ambulance. I arrived there and it was the worst place I had ever seen in my life: Cold, dingy, horrible staff that just stared at me like I was crazy. Once again patients were standing in one spot for hours on end, and others staring at me. They showed me to my room and I put my bag in the corner and went off pacing again. All day I would pace and nurses would shout at me to sit down, and I would scream back at them “I CAN’T!!!” They started to give me Lorazepam 1mg “when needed,” and it would calm my mind a little from the constant looping thoughts, but never the pacing, the pacing never stopped.
They left me in this condition for a week and told me I had “anxiety” that was getting worse. I knew what anxiety was and this wasn’t it! Finally after a week, a doctor saw me. She diagnosed me with “agitated depression” and prescribed me Klonopin 3mg and Lexapro 10mg and said, “You’ve tried it your way, now try it our way,” and made me sign an eight-week agreement to stay on these meds. All the time they were giving me up to 3mg Lorazepam a day too. I was so desperate I was willing to try anything, all along not knowing it was the very drugs causing all of this. Doctors would follow me around asking if I was hearing voices, or if I felt people were following me, trying to diagnose me with something. I would shout at them “NO!!!”
I would pace constantly, wake up, go and get breakfast if I could face it, but could never sit down to eat it. I would pace around the table grabbing the spoon and shoveling cereal in my mouth and pace again, same with lunch and dinner. There was a garden where you could smoke anytime you like. I would spend almost all day out there, pacing in circles, other patients telling me to sit down. I couldn’t. I would talk to people in the morning, and they wouldn’t know who I was by the night. They were completely different people after “med time.” There was a woman there who when we were smoking outside, she would come stand next to us, laugh her head off and pull her pants down and just take a shit or pee in front of everyone. She would do this on the sofas that people would sit on too! That was the only time I would laugh – not at her, just at the fact that someone would do that. I had never seen anything like it in my life. She would regularly get held down and injected with something that I have no idea what it was, but you wouldn’t see her until the next day.
I would wear the same trainers every day and noticed the soles wearing down. I would take them off at night and have blisters on every toe, bleeding. I resorted to wearing slippers all day that my mom brought in for me. She visited everyday along with my girlfriend, but I had no clue who they were. I would look at them and they would say “Hello” to me, and I would reply and say, “I don’t know who you are” – My mom who I had known for 30 years, my girlfriend who I was madly in love with for 13 years, I didn’t recognise either of them.
Mondays and Thursdays were “smoothie-making day.” They would get us all in a tiny room filled with fruit and blenders, and hand us a huge knife to cut the fruit up. Patients with huge knives who weren’t stable. Many a time I looked at it and thought how easy it would be to just slice my wrist. I was completely suicidal the whole time, wanting it to end.
One day out in the garden that was covered in small pieces of slate, I searched for the perfect piece. I found one and picked it up and would sharpen it throughout the day against the wall. It was razor sharp by the end of the night, and I said to myself in my head, “If I wake up the same tomorrow, that’s it, I’m doing it.” I went to my room and hid it under the bedside table and went to sleep. All night the nurses would walk by and shine a flashlight in my face, waking me up, every hour to make sure I was still in my room. Finally it was morning. I knew this because the cleaners would bang around, and doors would be slamming around me. I felt the same so I reached under the bedside table and started hacking away at my wrist, crying, but there was no pain, I felt nothing. Blood was pouring from my wrist and it started opening up wider and wider. I felt myself going faint, but also panicked and stumbled out of my room into the main area and started screaming, “I’M DYING, I’M DYING,” blood pouring out everywhere all over the floor, and then I blacked out. Next thing I know I’m being bandaged up by a nurse offering me 1mg Lorazepam. I took it and felt a little calmer. The nurse called me “silly,” and I looked at her and wanted to kill her. It hadn’t worked, I was still alive.
The pacing continued and the weight continued to drop off me. I would shower and look at myself in the mirror and could see my ribs sticking out. I looked so sick. Every day my family and girlfriend would visit me, and every day I wouldn’t recognise them. I was in a constant state of major derealisation. I would pace in the tiny visitors room around them, and they would just look at me, not saying much. I would obsess to them saying I was mad, that I wanted to die.
I realised I needed to get out of this place, and would beg to see a doctor only to be told they would assess me at the end of the week. Again I was out in the garden and a girl was sat on the bench holding her wrist. Walked over to her and she had a razor blade in her hand, so I asked her where she got it from and she told me her boyfriend had brought it in for her. (They never once checked anything my family would bring in to me.) She slashed her wrist right in front of me and blood was everywhere. She got rushed off somewhere and returned within hours a completely different girl, drugged up to the eyeballs, couldn’t even talk, didn’t know where she was. I spoke to her the next day and they were discharging her, a girl who the day before tried to kill herself.
I got to see the doctor along with five to six other people in the room, doctors and nurses. I tried to look and act as normal as possible to get myself out of there. All the time in the assessment I was pacing around their chairs in circles. They asked me if I thought I was ready to go home and I replied, “Yes.” I was nowhere near feeling normal but I had to get out of that place. They said I was ready but wouldn’t be giving me the Lorazepam to go home with. They had been giving me this daily, up to 3mg a day for three weeks. They called my mom and I gathered all my stuff together and was out within ten minutes, I got home and nothing felt real, the house didn’t feel like mine. I would pace constantly. Occasionally I would be able to lay down and try to listen to a relaxation CD, but I could only face it for ten minutes at most be-fore having to get up and pace again. I couldn’t be left alone for fear of killing myself, every day I told them I was going to kill myself.
I was then under the “care” of my GP who would prescribe me 100 0.5mg Klonopin pills at a time. I decided it was time to get off these drugs they had put me on. My girlfriend had researched on BenzoBuddies.org about what was going on with me and people had told her it was the drugs. I later found out she knew this while I was in the psych ward before they put me on all the meds, but my family told her she wasn’t allowed to tell me and to “leave it to the doctors.”
I first started tapering the Zopiclone. I hated the way it made me feel on waking: Drunk, confused, hung over. I did this over four weeks and the insomnia was awful. For four days straight I had no sleep. I would scream at my girlfriend to kill me, clawing at my skin, rolling around on the floor. Birds would be chirping outside and I would scream at them out of the window to shut up. I thought I was going crazy.
Next was the Klonopin. My girlfriend had researched but I still phoned the doctor on how to come off and she told me to cut 0.5mg a week, so I did. I went nuts, grabbing pills trying to shove them down my throat, grabbing knives again, anything to end my life, all the time still pacing, crying, screaming. I made three cuts so I was down to 1.5mg of Klonopin but felt absolutely crazy.
My girlfriend got in touch with BATaid, an organisation here in the UK, and they were horrified to hear how I had been treated. Una Corbett from BATaid said I needed to do a crossover to Valium using the Ashton Method. I did this over the course of six to eight weeks and the depression was horrific, so intense! Like a deep despair I had never felt before. The crossover to 30mg of Valium from 1.5mg of Klonopin was completed in September 2011.
At this point, my girlfriend suggested we get a dog to help me have something to focus on and to try and help get me out of the house. So we went dog shopping and came back with a little rescue Border Collie called Angel. She did help distract me and gave me something to do with my day. I would walk her but couldn’t go alone. I always had to be with my girlfriend, but could never walk far because of sheer exhaustion.
I held for a while at this dose and then made my first cut, as the Ashton Manual said, 2mg. I went absolutely crazy again. I would climb out of windows only to be dragged in by my girlfriend. The rage was unbelievable and I would feel it building inside me and punch holes in the doors of the house, had a fight with the fence in the garden and put holes all over it, knuckles covered in blood. I have never been violent in my life. I was always a calm laid-back man.
I was losing my mind completely and I couldn’t function at all. I’d spend all day in bed, not showering, barely eating, and when I did it was meal-replacement drinks, only getting up to go to the bathroom or lash out at doors or walls. The pacing had finally stopped, but now I was barely able to move. Angel would lay on the bed beside me and she was literally the only thing that I had any interest in whatsoever. I would hold her and talk to her.
I lasted two weeks and phoned Una again and she told me to immediately updose. I did and went back to 30mg and got worse, because it had the opposite effect on me. I literally couldn’t move now and was bed-ridden with the worse fear I’d felt. I’d also started to vomit in the mornings along with the complete and utter terror. I held for three weeks and started making cuts again, at a rate of 0.5mg a time every three to four weeks, but then the depression hit me big time at the two-week mark of each cut. I didn’t know what to do so arranged an appointment with a different psychiatric doctor. Her words to me were “If you were my son, I would put you into the psych ward and take you off all drugs right away.” I knew that was wrong, so ignored it and just asked for dissolvable Zyprexa tabs to tackle that. She told me there would be no withdrawal from it at all.
I would slice slithers from the Zyprexa tabs every few days, still continuing cutting the Valium every three to four weeks. I thought I’d been through the worst of everything by now, but I couldn’t have been more wrong. I would vomit every day, throughout the day, while reducing the Zyprexa, literally eating, vomiting, then eating again, I had to force myself to eat because I had lost so much weight. I was at my lowest weight by this time – 140lbs and I’m 5’11”.
Slowly things were getting worse and worse. I would still go out and walk Angel, always with my girlfriend. Then one day while we were walking she dropped something on me that I was not expecting. She told me she didn’t love me anymore and was breaking up with me. I went absolutely crazy, crying my eyes out. I walked home and got in the car. I’ve never driven so fast in all my life. I was doing 70mph in 30mph zones, not a care for other people on the road, all the time looking for walls to just slam into. I eventually got round to my sister’s and knocked on the door in complete hysterics. The girl who I had been with for 14 years now was leaving me, because I was sick, because she couldn’t cope anymore. I was completely crushed. I drove back home and spoke with her, and she said she would stay and take care of me, but it was over.
My now ex-girlfriend, who was sleeping in the other room would come to me in the mornings with break-fast, and I’d be screaming under the covers that people were after me, chasing me, I could hear the wind outside and was terrified of it. I was terrified of everything. I would wake up and hear monster noises, they felt so real, sometimes saying my name, sometimes just making horrible noises. I would cover myself with the bed sheets and cry, then suddenly I would have the urge, it was almost like something taking over me, but to throw myself against the wall repeatedly, over and over. It was then that the visual hallucinations started. I looked towards the door and a lady was standing there, not threatening, just standing there. I covered my head, looked again and she was still there, just looking at me, not saying a word. I was positive I had gone mad now.
By this time I was managing to go into a chat room online that my girlfriend had found. I’d go in there during the day and chat with other people going through withdrawal. Some days I was unable to type out words, but somehow they knew what I was saying, it made no sense to me. I was typing one day and felt a presence next to me. When I looked to the side, a man was stood next to me, clear as day, wearing a hat. I was absolutely terrified. I told them in the chat room and they said I was fine, and to ignore him. How could I ignore a man stood next to me?!?!?!? He never moved, he never did anything. But he stood there for around half an hour then just disappeared.
At this point I did a slight updose on the Zyprexa and had a seizure. My ex-girlfriend phoned an ambulance but filmed me while waiting for them to arrive. Again I got taken to the ER. The doctor there watched the video and agreed it was a seizure. She then walked away (I later found out she spoke with the Crisis Team), came back and said it wasn’t a seizure and was my anxiety!! They were covering their backs!
I returned home and had an episode of tardive dyskinesia. I couldn’t control my tongue and would make gurgling sounds that I’d never heard before in my life. My arms and legs would move on their own. I ended up at the ER yet again. They checked me over and sent me home again saying this can happen when you start an antipsychotic and may have happened because of the slight updose. I got home and it got worse. I screamed and suddenly my jaw felt like it was being ripped open. I was screaming forcing it closed, but I couldn’t, it wouldn’t close. “Luckily” that only lasted two days. The withdrawal from Zyprexa went on for six months, though, and I would have blackouts, and come round on the floor not knowing what happened. And when my ex-girlfriend went away for a week on holiday, I was forced to walk Angel on my own. I walked her one day and started to feel really faint and dizzy, and the next thing I know, I’m lying on the floor in mud with Angel lay beside me. I had blacked out but she didn’t leave my side. Every day this went on: Vomiting, hallucinating, living in complete terror. I really didn’t think I was going to live through it. Every day I felt like I was either going to die, or I would kill myself. But I made it, the withdrawal from Zyprexa finally ended.
By this time it was mid-September. I was at 20.5mg of Valium as I had been cutting the whole time while in withdrawal from Zyprexa. I sped things up, too, because of the depression hitting at the two-week mark, and others telling me to try going faster. The cuts were getting easier that way, and I would cut, “feel it” around day four or five, then settle again until I was ready to cut on day 14. It was never tolerable and every day was hell, but I wanted off. Have been cutting this way ever since. I went to cutting every ten days, to speed things up, to get off faster, but eventually I would get a massive wave that was telling me I was going too fast. I would get on Skype with friends I have found along the way and just cry, begging to die. They’re invaluable to me and I couldn’t have done any of this without them! No way!
I have been continuing to cut, changing how often as my body tells me, anything from 10-14 days, but never longer unless I get really slammed. I changed my sleep schedule to sleeping through the mornings. I go to sleep anywhere between 6-8am and wake at 1-3pm. Luckily, because I got approved for disability, (no way could I work in this condition) I can sleep this way, and it has been a massive help in reducing/avoiding morning terror and anxiety.
I still suffer daily with anxiety, extreme fatigue, derealisation, etc., but things have gotten so much better now. I no longer want to kill myself every day. I now live alone, with Angel, and I see hope for the future. I see myself getting off these drugs that have ruined my life, my relationship with my now ex-girlfriend who I imagined spending the rest of my life with, relationships with family members – they have ruined every-thing, but they aren’t going to beat me.
I’m at 11.5mg Valium now and plan to titrate or use a gram scale when the cuts become too much for me. Hopefully I can get to 10mg before I have to do that, but I know I can do this now. I know I still have the Lexapro to come off of after the Valium, but I’m confident I can do that, too. I look at life completely different now: I value friends more, real friends who are there for me no matter what, who don’t judge me, who get this, who will never leave my side, and I will do the same for them. I wish it didn’t take this experience to make me realise all this, but it has. It’s made me a better person. I’m more confident in myself, I value every little thing more now, but most of all I want to live. I want to live to show others that it is possible to do this. I want to live to bring awareness of what these drugs are capable of and to stop it from happening to others if I can. I want to live to live life to the fullest – and I WILL!!
Wayne, I read it, the whole drug fiasco/nightmare you’ve been thru. It’s a true miracle that you’re still with us fighting the good fight to get your life back on track. I’m so glad you were able to write it all down, this is a record of your battle for life. Amazing warrior you are to take good from this experience and grow as a man. My thanks to Angel for helping save your life and thanks to all those you talk to and don’t judge and just listen. I bow to your strength and courage.
Hi Wayne. I just finished reading your story and it touched me so deeply. I’m so sorry you went through all that. I’ve been in one of those places 4 times in my life. It was a long time ago but your story brought back the memories. It’s horrible that they basically have not changed in 30 years. They pumped me with thorazine because I cried and screamed when I found out my friend died. As Whoopsie said it’s a miracle that you’re still here. But you are very strong and you’re a fighter. I wish you the best as you ditch these horrid drugs.