I am finally writing my benzo success story. I apologize for not being a participating member on this forum, but was just too neurotic to talk, much less write. I know how much the success stories meant to me during withdrawal and recovery and would like to add mine here and hope that it helps someone else who can relate. I’m sorry so many of you/us are suffering. I searched for symptoms and am so grateful that I wasn’t alone in this hellish experience. Thank you all for being so brave and compassionate!
I wanted to wait until I was completely symptom free and done with all the emotional and relationship fallout before posting this. As of today, September 29, 2016, I can finally say that my life is as good, if not better than before this experience.
I was prescribed .25mg Xanax for Restless Leg Syndrome in 2005 when my sister was dying of ALS… my doctor offered it at every visit and I finally said yes in my profound sadness (at least I wasn’t self-medicating, right?). I was already taking Prozac and Welbutrin, and was told that this combination would do the trick and I would feel right as rain. Wrong! I gradually went to .50mg Xanax and in 2010 c/t’d off all my meds when my husband and I lost our jobs and health insurance. I was blindsided by the symptoms and reinstated Xanax when I realized my horrific symptoms were due to withdrawal and that I would need to function during my son’s upcoming wedding, but I never did stabilize again. When I asked my doctor how he could give me something that would make me feel this way, he said, “you’re not going to like what I have to tell you, but I think you need to take more” and doubled all my doses and threw in Abilify for good measure – I found a new doctor to monitor my taper and started on 11/12/11 and jumped at .015mg on 11/1/12 and had every symptom in the book during the taper and after jumping: head tightening, tingling, numbness, spasms, cramps, shaking, rapid heart rate, extreme temperature fluctuation, nausea, insomnia, tinnitus, constant head-to-toe itching (even my toe nails itched), panic, auditory confusion, depersonalization, de-realization, loss of long- and short-term memory, dark intrusive thoughts, lost my feelings of love and empathy, lost my sense of humor and imagination, lost my balance and ability to move or think spontaneously, felt nothing but anger/rage and fear/terror, couldn’t form sentences or communicate my feelings because all I felt was neurotic, paranoid, guilty, and self-conscious to the extreme, couldn’t make a decision to save my life, and the suicidal ideation was relentless 24/7. The physical symptoms were acute and finally not so terrifying during the first year after jumping, and then the mental symptoms became more acute and continued to be terrifying but diminished over the next year. By November, 2014, I thought I was ready to write my success story… I was shaky, but thought things were manageable - all that remained of the physical symptoms was insomnia and tinnitus; but, I wasn’t as well as I thought and had a stress-related setback that sent me back into the mental symptoms again with a vengeance for the next year. By September, 2015, I would have considered myself well again except that I had lost my best friend of 25 years during this process and, due to my inability to communicate, nearly lost my relationship with the younger of my two adult daughters. I was nearly symptom-free, but was heart sick and my nerves were still frayed and not quite able to celebrate yet.
I think the thing that exacerbated things for me was lack of initial support. It was so hard to fake being normal and made me even more nervous to be around people who expected me to be normal. The reactions I got from the first people in whom I confided my dilemma were so shocking that I tried to hide my symptoms rather than explain yet again that I wasn’t well. When I tried to explain to my best friend, she started avoiding my calls and when I sent her a written plea for help, she finally screamed at me, “don’t you ever send me one of your sob stories again”; and, that, after I was there for her during her alcohol recovery… unfortunately, it set the tone for my fear of telling anyone else. I felt that I exuded misery. The horrific intrusive thoughts made it impossible for me to think or talk about anything else… distracting myself took every brain cell I had, every second of the day, for years on end. When I would talk with someone with whom I had to fake wellness, I would be incapacitated with relentless self-recrimination, fear and regret to such an extent that I would either try to lamely explain again or just avoid them. The isolation was killer painful, and there’s no greater loneliness than benzo loneliness. I finally found Benzo Buddies and found articles by Dr. Jennifer Leigh and Baylissa Fredericks (Bliss Johns) and shared them with my husband (he was mad at me for not working and we barely spoke for almost 3 years) … it wasn’t until the 3rd year that I could get him to understand that, yes, I was sick and it wasn’t my fault that I was unable to function. If you could have died from loneliness, lack of sleep, or just by wanting to die, I surely would have. I was hurting, physically, mentally, down to my bones and soul, and couldn’t find the words to express my need for help. Thank God, I found support from an old friend, who I now consider an angel and for whom I’ll be forever grateful, and was finally able to confide in my sister when I had the confidence that I wouldn’t drive her away. I sought help through AA and NA (I didn’t fit in there) and finally found a lovely group of women in a bible study who didn’t judge me (they were used to people who were struggling, complaining, and crying); but, of course, I had to be careful to not say all the crazy things that were on my mind. My biggest fear was that people would know I was crazy and either fear me or force me to take the meds. Thank God for Benzo Buddies!... You were my lifeline when I had no one else. You gave me hope that I would, indeed, eventually recover. Yet, I was terrified that it would never end. I thought I couldn’t stand another minute of it, much less another hour and another year, for 4 years. Your success stories and camaraderie let me know that I wasn’t alone and kept me from doing anything drastic.
I just couldn’t interpret reality. All three of my kids left home and got married while I was in withdrawal and recovery and I didn’t know where I stood with any of them. I couldn’t tell if they were happy and independent, or if they’d run out of the house screaming and glad to be rid of me. I was an empty-nester in the worst way. All of my relationships were in a shambles and I felt like a stranger to everyone. I was furious with my family and closest friends for not understanding and hurt beyond measure with those who didn’t understand and would rather think that I was lying about my predicament or that I’d just suddenly become a neurotic person rather than think I was telling the truth that a medication could wreak such havoc with a person’s mind and body. I was so filled with anger that it was frightening. Everything for 4 years of withdrawal and recovery had been filtered through my sick obsessive mind; and, after all of this, I was still sick in my heart for having failed my children and just didn’t know to what extent. I was eventually able to get two of the kids to validate that things weren’t as bad as I feared, but my youngest adult daughter was keeping me at a distance, and I couldn’t figure out why or how badly she felt toward me after all these years of faking my emotions and trying to cover for my illness, and pursuing her did not turn out well. Finally, last month, she reached out to me to validate that I had hurt her and was, indeed, not there for her when she needed me (I’d been a nervous wreck and shrank away when I should have come forward in some key family interactions and could only continue to kick myself and pray that I would be my old self soon and that the next social interaction or holiday would be better – I put a lot of pressure on myself to behave “better” next time); and, although I felt virtually symptom-free this last year, I was still sick that I’d hurt, and possibly lost, my youngest daughter through this benzo ordeal. This was the last thing that weighed heavy on my mind and nervous system to feel that I’d failed as a mother and didn’t know how to explain my years of emotional absence. Now that I am well again and able to communicate, some people have said, “Why didn’t you tell me”? And, I could only reply that I tried, or that I just couldn’t explain it. I used to tell my husband, “I used to be a good person”; and, he’d say, “you still are a good person”; and, I’d think… you don’t know what I’m thinking. Those self-recriminating thoughts are finally gone. All the extreme anger and fear is finally gone. I knew I was disingenuous and was faking my feelings… I had to… I couldn’t tell people how horrible I felt or how angry and afraid I really was. The intrusive thoughts were something I’d have given anything to be rid of, and it felt just as awful to burden anyone else with them. How could I celebrate my recovery when I still felt that I’d lost my family and hurt my children? They were just graduating from high school when I went on the meds and graduating from college and moving out of the house when I was in withdrawal/recovery and it was all so disorienting. I had misread every word and every gesture and was in gut-wrenching agony over how I wasted those last years that the kids were at home. I just needed some validation and felt pathetic and needy for asking for it; but, by gosh, I sure needed it and, with some people, it just wasn’t forthcoming. I’ve finally received and extended heartfelt apologies for my incomprehension during those years among those closest to me and cry at the thought that this all is finally, blessedly, mercifully behind me. After years of crying with sorrow, I’m crying with sheer relief that my benzo withdrawal and recovery are finally done and that my closest relationships are still intact! I feel like 5 years of stress and personal turmoil has been lifted off of me and, indeed, it has.
I can hear songs in my head again, instead of being consumed with horrific thoughts of rage and self-harm. I can cook a meal without being completely bewildered about how to even start. I can drink a beer while I’m barbecuing. I can interact with people without crushing guilt and self-doubt. This has actually been like a 5-year long session of regression therapy. Every single thing that anyone had done to hurt me or that I’d done to hurt someone else, had come into my mind with the intrusive thoughts, all at the same time… the overwhelming guilt, anger, and self-recrimination was soul crushing. I hated myself, everyone and everything and was so bitter that I’d become a person that I despised; but, I’m laughing again, talking easily with friends and family again. For years, I ran away from my neighbors when I saw them outside. Now, I can have company over without falling apart at the seams, terrified that I’d say something stupid to drive them away or start crying and prove that I was, indeed, crazy. My bed feels soft again instead of feeling like the sheets are made of glass shards and the pillow made of concrete. My skin’s not crawling. My mind’s not obsessing. My heart’s not pounding. I’m not in a 24/7 panic state. I can relax again and feel joy again. Even though I’m 60, my muscle tone is returning... I know I should have exercised, but just couldn’t bring myself to with zero to several hours of sleep for years. My physical stamina seems to be returning faster than I thought it would. I’d lost 50 pounds and have gained back 10. My wrinkles are lightening up. My hair doesn’t feel like straw anymore. I can remember the past in its correct context and without feeling guilty. I can make decisions again and not fear the worst of outcomes. Someone can tell me they’re busy, and I don’t assume the worst or that I’d done something wrong. I can think and behave naturally again. I can watch TV and enjoy listening to music again. I can talk about benzo withdrawal and recovery without shaking or getting nauseous.
Life is good again. I wasn’t sure that I’d ever be able to say that. But, it’s finally happened.
Please take heart. Even if you’re one of the protracted people, this nightmare will eventually be over. It took me two months short of 5 years, including the year-long taper, and the last year was just figuring out how bad things had gotten in my personal relationships, mitigating the relationships with my adult children, and accepting the loss of my best friend of 25 years.
I feel like I can pick up the pieces and start again. I feel strong again. The lessons I’ve learned will serve me well for the rest of my life. By necessity, I’ve learned to cope with anger. I’ve learned patience. I’ve learned to try really hard not to judge other people so harshly because you never know what someone else is going through. I’ve learned to distract from my own thoughts, no matter how relentless. I’ve learned forgiveness and am so glad that the people in my life have learned to forgive me. I’ve learned that I can relate with autistic people because I was trapped by my emotions in my own head and just couldn’t express it. I’ve learned to never apologize again for taking care of myself and my nervous system; and, out of sheer necessity for survival had to cut a couple people out of my life who were causing me stress and exacerbating my illness by treating me badly… I felt guilty at first, but learned who my real friends are, and true friends don’t kick you when you’re down. If it weren’t for the mishap of hurting my daughter with my inability to comprehend or relate, I’d say that I successfully survived and came out better off for the experience and know, with a healthy mind, that relationship will continue to improve. Special family events were just so unnerving to me and I put so much pressure on myself and my husband to make things happy that I took all the joy and spontaneity out of everything. I found it impossible to relax, and now I’m finally able to. Now that I’m back to being myself, I hope I can prove that I’m not just a neurotic or inattentive mother and that I got knocked down but can pick myself back up again. I found out how strong I really am, and that’s an incredible feeling. It almost seems too good to be true that this ordeal could finally be over, but I’m positive it is. I feel genuinely “myself” again and don’t have to talk and behave contrary to my feelings because I finally feel good again.
I came into this experience with plenty of problems, otherwise I wouldn’t have been seeing a doctor, right? But, I finally worked out a long lifetime of emotional issues out of sheer survival to make it through recovery. I completely railed against the injustice of having this happen and felt that it ruined my life. And, I can finally say that I do feel that I’m better off now than ever before. To whomever is experiencing the not-to-be said ideation, you’re stronger than you know. Try to avoid stress as much as you possibly can. Treat yourself well and know that you deserve it. If you feel desperate, seek help wherever you can. Distract with whatever means you can. I prayed incessantly, and I didn't have a religious bone in my body before this all started. You will heal… everything you’re going through is your body [...] itself. I fought it every step of the way and wanted to be better so badly that I stressed myself even more. Every morning when I wake up now, I thank God that I slept and happy for 4 or 5 hours, that I’m alive and symptom free, and so glad that I didn’t do anything too stupid in my mentally-twisted state. Count your blessings, even if you can’t think of a single one. Everything’s going to be alright. You’ll regain everything you’ve lost, even if it doesn’t look that way now. [...] will come to you and you’ll be so grateful. I know it’s impossible to do when you’re hurting, but try to relax and know that you will heal. Please know that it will end and you’ll be so elated. Bless you all! Thank you all! Thank all of you who support, maintain, and contribute to this site. I can’t thank you enough. When no one on the planet believed me, you were here for me and for each other. You gave me hope and strength. I am well again after nearly 5 years. I spent this last year kind of getting over the trauma and felt like I’d been pulled through a knot hole backwards. Now that I’m able to communicate again, out from under the guilt of failing as a mother due to my emotional absence and know that I haven’t done any permanent damage, I can stop blaming myself and benzo’s, and I’m finally ready to celebrate. I’m still pinching myself and find it hard to believe that this benzo hell is finally over. And, it finally is!
Sorry this is so long. Believe it or not, I was once successful in a career field where I wrote manuals that were considered the definitive source for company-internal technical documentation. Imagine my horror in not being able to string an entire sentence together to explain my plight to loved one’s and friends during this ordeal. I’m sure my mind will continue to improve now that I’m out from under the most stress-filled time of my life and just wanted to get my Success Story out there. I hope you’ll take it in the spirit in which it’s intended.
My love and heartfelt thanks go out to you all,
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