Author Topic: 4 Years Benzo Free - Finally Writing My Success Story  (Read 18970 times)

[Buddie]

4 Years Benzo Free - Finally Writing My Success Story
« on: September 29, 2016, 09:37:09 pm »
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.  Iím sorry so many of you/us are suffering.  I searched for symptoms and am so grateful that I wasnít 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 ALSÖ  my doctor offered it at every visit and I finally said yes in my profound sadness (at least I wasnít 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/tíd 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 sonís 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, ďyouíre not going to like what I have to tell you, but I think you need to take moreĒ and doubled all my doses and threw in Abilify for good measure Ė 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, couldnít form sentences or communicate my feelings because all I felt was neurotic, paranoid, guilty, and self-conscious to the extreme, couldnít 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 storyÖ  I was shaky, but thought things were manageable - all that remained of the physical symptoms was insomnia and tinnitus; but, I wasnít 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 wasnít 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, ďdonít you ever send me one of your sob stories againĒ; and, that, after I was there for her during her alcohol recoveryÖ  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 elseÖ  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 thereís 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) Ö  it wasnít until the 3rd year that I could get him to understand that, yes, I was sick and it wasnít 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 couldnít 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 Iíll be forever grateful, and was finally able to confide in my sister when I had the confidence that I wouldnít drive her away.  I sought help through AA and NA (I didnít fit in there) and finally found a lovely group of women in a bible study who didnít 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 couldnít 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 wasnít alone and kept me from doing anything drastic.

I just couldnít interpret reality.  All three of my kids left home and got married while I was in withdrawal and recovery and I didnít know where I stood with any of them.  I couldnít tell if they were happy and independent, or if theyíd 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 didnít understand and would rather think that I was lying about my predicament or that Iíd just suddenly become a neurotic person rather than think I was telling the truth that a medication could wreak such havoc with a personís 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 didnít know to what extent.  I was eventually able to get two of the kids to validate that things werenít as bad as I feared, but my youngest adult daughter was keeping me at a distance, and I couldnít 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 (Iíd 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 Ė I put a lot of pressure on myself to behave ďbetterĒ next time); and, although I felt virtually symptom-free this last year, I was still sick that Iíd 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 Iíd failed as a mother and didnít know how to explain my years of emotional absence.  Now that I am well again and able to communicate, some people have said, ďWhy didnít you tell meĒ?  And, I could only reply that I tried, or that I just couldnít explain it.  I used to tell my husband, ďI used to be a good personĒ; and, heíd say, ďyou still are a good personĒ; and, Iíd thinkÖ  you donít know what Iím 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 feelingsÖ  I had toÖ  I couldnít tell people how horrible I felt or how angry and afraid I really was.  The intrusive thoughts were something Iíd 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 Iíd 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 wasnít forthcoming.  Iíve 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, Iím 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 Iím 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 Iíd done to hurt someone else, had come into my mind with the intrusive thoughts, all at the same timeÖ  the overwhelming guilt, anger, and self-recrimination was soul crushing.  I hated myself, everyone and everything and was so bitter that Iíd become a person that I despised; but, Iím 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 Iíd 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 skinís not crawling.  My mindís not obsessing.  My heartís not pounding.  Iím not in a 24/7 panic state.  I can relax again and feel joy again.  Even though Iím 60, my muscle tone is returning...  I know I should have exercised, but just couldnít 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.  Iíd lost 50 pounds and have gained back 10.  My wrinkles are lightening up.  My hair doesnít 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 theyíre busy, and I donít assume the worst or that Iíd 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 wasnít sure that Iíd ever be able to say that.  But, itís finally happened.

Please take heart.  Even if youíre 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 Iíve learned will serve me well for the rest of my life.  By necessity, Iíve learned to cope with anger.  Iíve learned patience.  Iíve learned to try really hard not to judge other people so harshly because you never know what someone else is going through.  Iíve learned to distract from my own thoughts, no matter how relentless.  Iíve learned forgiveness and am so glad that the people in my life have learned to forgive me.  Iíve learned that I can relate with autistic people because I was trapped by my emotions in my own head and just couldnít express it.  Iíve 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 badlyÖ  I felt guilty at first, but learned who my real friends are, and true friends donít kick you when youíre down.  If it werenít for the mishap of hurting my daughter with my inability to comprehend or relate, Iíd 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 Iím finally able to.   Now that Iím back to being myself, I hope I can prove that Iím 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 thatís an incredible feeling.  It almost seems too good to be true that this ordeal could finally be over, but Iím positive it is.   I feel genuinely ďmyselfĒ again and donít 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 wouldnít 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 Iím better off now than ever before.  To whomever is experiencing the not-to-be said ideation, youíre 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 healÖ  everything youíre 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 Iím alive and symptom free, and so glad that I didnít do anything too stupid in my mentally-twisted state.  Count your blessings, even if you canít think of a single one.  Everythingís going to be alright.  Youíll regain everything youíve lost, even if it doesnít look that way now.  [...] will come to you and youíll be so grateful.  I know itís impossible to do when youíre hurting, but try to relax and know that you will heal.  Please know that it will end and youíll be so elated.  Bless you all!  Thank you all!  Thank all of you who support, maintain, and contribute to this site.  I canít 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 Iíd been pulled through a knot hole backwards.  Now that Iím able to communicate again, out from under the guilt of failing as a mother due to my emotional absence and know that I havenít done any permanent damage, I can stop blaming myself and benzoís, and Iím finally ready to celebrate.  Iím 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 oneís and friends during this ordeal.  Iím sure my mind will continue to improve now that Iím out from under the most stress-filled time of my life and just wanted to get my Success Story out there.  I hope youíll take it in the spirit in which itís intended.

My love and heartfelt thanks go out to you all,

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #1 on: September 29, 2016, 10:19:35 pm »
Wow what a story!  So great to hear and gives hope, even though I can't "feel" hope, I can believe it will come!  Please stay on the forum and encourage others in their journey.  We need more like you!  Loss of feelings of love and empathy along with all the other symptoms you describe are what I am going through!  So great to hear that this will return!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #2 on: September 30, 2016, 12:05:55 am »
Beautiful story! I'm so happy for you! I cried a lot during reading your story because I can relate in so many ways.

You give me hope, even right now I feel this suffering never going to end.
I'm only 4 months out and I don't feel to much improvement. Waiting for window.

Did you had window or you get gradually better and better?
Enjoy your life!
 :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #3 on: September 30, 2016, 12:28:49 am »
What an encouraging success story !  I am two years off Xanax and doing very well but have a bit more [...] to do.  I agree so with starting each day [...] our blessings.  No matter how badly I felt, I usually felt better when I thought of the positives in my life.  Everyone who reads this can relate to parts of it and feel hopeful as to their own recovery.  You have survived a hellish journey and are stronger for it.  Love, hugs, and blessings.  KB
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #4 on: September 30, 2016, 01:15:05 am »
Thank you so much for your replies.  It so hard to fake your feelings and I wish I had some good advice.  I did the "fake it till you make it", but I wasn't very good at it.  I couldn't tell if I was being too aloof or too gushy...  I'm naturally gushy; but, when I was sick it all felt wrong.  I knew who I loved, but couldn't find the appropriate words for the correct times and that's why I tried to limit my exposure.  I'm still not sure how I could have handled things any better.  Relaxing and being myself would have been optimal, but I've only been able to do that since I've felt better.  I realized that I couldn't read people's facial expressions or voice inflections either, but I can again.  I hope you keep trying to show your love.  My problem was that I went overboard and over corrected when I felt the relationship was in jeopardy, but I was more myself in relationships that I felt good about.  I hope you can convince yourself to relax and not put too much pressure on yourself.  I do think that's the mistake I made.

I did have windows.  I'd have to look back through some of my journals to see exactly when.  I'm pretty sure it wasn't until I was off benzo's for at least a year, maybe a year and a half.  I remember that it was short, but definitely wonderful.  It gave me hope that my real self was still under there.  I remember thinking that I can see how withdrawal could be confused with manic depression because I was sure elated to finally have a window.  All of the sudden, I realized that I wasn't obsessing and that I felt absolutely normal.  It went away about as quickly as I could recognize that I was in one.  Fortunately, they did come more and more often, started lasting longer and eventually the waves were less and less intense.  For a while, the windows and waves came unpredictably; but, as I got better, I noticed that the waves would come when I was in a stressful situation.  I tried avoiding stress as much as possible; but, with meeting the adult kids' new in laws and doing wedding arrangements with out of town guests, it was hard to get my nerves under control and, of course, the harder I tried to relax, the worse it got.  Eventually, at my last daughter's wedding, I kept my composure better than I had in a long time.  Indeed, my first window was an indication of things to come and things got better and better unless, as I said, there was just plan too much stress; and, even then, as time wore on, I managed it better and better.  I've had some stress since I've been well again, and it's nothing compared to how intense it had once been. 

Oh, I want to mention that, once I started feeling better, time started to speed up for me again...  when I was sick, the days felt like weeks.  Time is back into its proper perspective again and the days don't drag the way they once did.  I hope the time goes quickly for you and that you heal soon!

Sending you cyber hugs,

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #5 on: September 30, 2016, 01:23:26 am »
[...],

This is the best success story I have read and I have read them all.  I cried tears of relief that, someday, I will be well too.  Thank you for giving me the strength to continue until it is over.

Love,

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #6 on: September 30, 2016, 01:38:21 am »
Incredible story of survival out of sheer will and persistence!!!  :thumbsup: :thumbsup: It gives me hope.

Did the doctors ever find anything out of the ordinary in blood tests? Did you find any doctor who believed you?

I find the loneliness really hard. Everyone says, "Oh, I used to feel like that, too." And I want to scream at them, "No, you don't understand!!" My son stands by me. But I feel for him. He's trying to understand what I'm going through without ever having gone through it himself. Who can truly get what this is about unless they've experienced it? There's nothing to compare it to.

CONGRATULATIONS, [...]!!!! Enjoy the rest of your life!!!! You deserve it!!!!


Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #7 on: September 30, 2016, 02:13:33 am »
Thank you so much for your kindness and compassion!  I know that if it hadn't happened to me, I'd have found it hard to believe that a medication could make a person this sick!

I called my old primary care physician and she switched me from Xanax and Klonopin for its longer half life and monitored me during my taper for the following year.  I could tell that she didn't quite get it because she even tried to prescribe me Lunesta to help me sleep.  It was a sweet thought.  I actually even tried to take a half of one, out of desperation to sleep, but it made my tongue have the texture of cauliflower and changed my saliva glands and made everything I ate for the next two months taste like a tin can.  I haven't been back to the doctors since I jumped in 2011, except to recently see an ENT to get hearing aids last week; and, when I filled out their forms, I put down that I'm allergic to benzodiazepines.  I'm so afraid of it that I'm thinking of getting a medic-alert bracelet.  I feel better than I have for over 10 years.  I don't know what I'll do if another doctor wants to prescribe me anything...  I guess I'll explain my reaction to benzo's and think long and hard and do a ton of research before I take anything.

Thank you so much for your comments!  I wish you continued and complete [...] soon!

Hugs,

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #8 on: September 30, 2016, 02:32:24 am »
Dear [...],

Thank you sooo much for writing your story...what a true inspiration you are! Yes, Thank God you are finally healed!
I am just 4 years off Xanax...I still have many sxs you describe ....I feel like I am at a stand still now, and have been for months . I know [...] is happening....it is a slow process ...

It is good to hear that possibly at 5 years....I may have complete [...].... I try to do normal things to feel normal....it helps somewhat.
I can relate to a lot of your story .....I still at this point just don't feel like me...but slowly getting there .
I still have my my mental and physical pain each day.....

I am sooo happy for you! God Bless you and thank you for sharing your story.
Much love and happiness ...little
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 4 Years Benzo Free - Finally Writing My Success Story
« Reply #9 on: September 30, 2016, 02:21:56 pm »
Such a beautifully written account of your struggles. Thank you so much for writing.  I can relate to so much, especially the children.  My two eldest went off to college during my withdrawal, and I feel the way you do. I wasn't there much for them during their high school years either because of interdose withdrawal, and it breaks my heart.    I'm so glad you have healed, it gives me hope for the future.  Sending you hugs and happiness.
« Last Edit: October 01, 2016, 05:17:58 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.