How amazing that this documentary is coming out right now. The words of these people are those who truly get it. I hope I can get behind a movement that brings to light the true horror and poison of these medications and the lives they have altered/ruined or transformed. Breakdowns = Breakthroughs. There is no way this stupid goddamn pill is taking me down. Listen up already people. This has to stop!
My body is saying NO. I had a conversation with someone the other day that stuck with me. He said he felt I should let everything go now or else 3 years from now I could be in a worse position. Everyone says work is a good distraction. Some days it is, but I prefer peace and quiet at the moment. Days to be on my own and heal and take care of myself. I don't have that luxury at the moment to do that, but I am not sure if I am making a bad decision by keeping my life going. The question is should I let everything just GO right now, just surrender or keep going, taking care of others and being concerned about my responsibilities. I mean if I had a trust fund, believe me I would quit work tomorrow and take a month long retreat on an island. The problem is in benzo w/d there is no escaping or knowing when it will hit harder than other times. Some days are ok and others tense. I know that the stress response can turn on with just a THOUGHT. A powerful thought. like am I in the right marriage? Am I going to die can send me shaking for hours.
My body has been saying NO for the last 3 years. With a full time business, two kids, sleepless nights, pouring more and more responsibility on top of responsibility my body broke. I know joy, fun and love is the answer. Somewhere somehow I hope I am getting close to that.
I don't want to end up in an obituary in Gabor Mate's speech, I know that much.
Trying to find balance.
I did yoga today, hatha yoga. Normally the kind of yoga that my Type A personality would shun and complain about.. it's not hardcore enough, I am not getting fit enough, I am wasting an hour, getting angry etc etc..I am not getting that tight ass I want... You know what? This experience is stripping me to my essentials because I could care less about any of that...
Today it felt just right,
I was glad I could be still somewhat in class. My body is burning again but I am going to choose to ignore it. The depressive feelings are quite intense and I just want to curl up in a ball and be alone. I hope everyone is hanging in there. This blog sounds quite desperate because I think in benzo w/d it makes you feel quite desperate. Like a quivering mess. Healing is happening each and every day....
The question for many of us is how did we get here. Yes, I might be an accidental addict when it comes to benzo and substances, but I am all too familiar with addictive tendencies--overspending, shopping, overworking, eating disorders (recovered now), overdoing, love addiction, pushing through, stuffing down my truth again and again. Had I known how to have balance in my life after children, I would not be here. Had I not been so afraid during and after I had children, I might not be here. Had I trusted in a power greater than myself, trusted in the universe and the order of things I would not have needed to medicate. Had I had a partner that I had felt more connected to during the stressful and beautiful time of having children, I would not be here. So am I surprised that I am here? No, not really. Am I ready to overcome this and think, act and behave differently so I can heal and leave my past behind? Hell yeah.
Growing up with parents who were traumatized they couldn't give me what they didn't have themselves. My father left when I was 6 and instead of crying and grieving the loss, I remember laughing. I coped by laughing. If I had felt safe enough or emotionally attuned to enough to grieve my feelings, I might not have had asthma and a host of other medical issues that required lots of nasty medications and left my immune system even more vulnerable than it was. I was a highly sensitive child and now I guess what they call an HSP ( highly sensitive person). Stuffing down the truth, pushing down, holding in, perfectionism, anorexia, chronic pain--all of these issues are born out of my early trauma.
I am really ready to let it all go--give it all up to the universe and say, I am ready to manifest something different. I love Gabor Mate and his ideas and philosophy on addiction, attachment and trauma. I spoke to a fellow benzo traveler today and she called because of some deep physical pain, Once we talked, she wrote me that her pain had shifted a bit, the energy had moved to her legs and it was more bearable. We need each other and we can help regulate each other. Especially through this process. I find as wonderful as my friends are, no one can understand this if you haven't lived it or felt it or believe it.
People just say, oh, ignore it. I can't really ignore when my body feels like it's been lit on fire. I can keep talking to myself gently and saying, this too shall pass. Yesterday was a hideous day and today is a better one. Only because some people make it off without incident doesn't mean there are many many of us suffering silently, and courageously. It's important to look at what drew us to the medication in the first place and to deal with that conflict head on however and get to the root cause. For me, this video resonates. My problem lies in attachment and it always has. I feel terribly that my young children have a half absent mother this last year because of this situation. I find it hard to be present and do the hard work of parenting at the moment, I am determined to have better days or accept whatever days come up. I am at 3mg V today! Hurray. blech!
Things partners can do to help:
-listen with curiousity--really listen. Let yourself be moved by your partners experience. Let their pain in so they can feel your love
-give hugs, foot rubs, gentle touch
-express your needs, when you are getting burnt out on 'benzo talk'-set limits
-take care of yourself
-express your frustrations, your worries -don't try to be a martyr.
-ask questions about what you can do to help
-try not to engage in any intense fights or conversations. Your partner is most likely not thinking straight and will say and do some crazy ass shit ( I kicked a chair, flew off the handle numerous times)
-tell yourself this is temporary and temporarily pick up the slack, your partner basically has freaking brain damage right now
-try not to make any big moves or decisions. So many relationships crumble under this stress and many have already been strained which probably led to the medication in the first place.
-talk softly, try to control your temper
-if you are spiritual, walk, meditate or exercise together. Hold hands. Make the person you are with feel loved and accepted through their craziness.
You are all amazing spirits on a difficult path at the moment. See what lessons there are here for you.....
I know this sounds dramatic, Many people go through benzo withdrawal and don't experience any powerful depressive or anxious or uncomfortable physical sensations. But many of us do.. I think there will be more and more spoken and written about benzos and the damage they cause. How is it that doctors don't know this? Why is it that an acupuncturist actually said to me, "Don't worry, you need to sleep, just take these you aren't an addict". Why did I listen. My nervous system was in shock from a steroid shot and I was vulnerable. Tried to keep things going in my life, my business. I am at that point where I am comfortable letting EVERYTHING go. I just haven't pulled the trigger yet. Today felt brutal. It's hard to feel like you are being burned alive all day coupled with depressive thoughts and fatigue and back pain and bladder pain. I did good things. I went to work. I walked. I curled up in a ball. I meditated. I prayed to angels and the cosmos--please please please... make this go away or show me the way out.
I normally have a great sense of humor. I love to laugh. I love comedy. But this shit is pulling me down into darkness. Maybe I have to go so deep into it to come out victorious -bright, alive, happy....
Right now I am not even half way through my taper. I am on 3mg of valium from being 'stable' on 5mg (though once I cold turkeyed I was never really stable). I have to be a mental ninja and stay in neutral. No distractions. Just get up and do your day. I am using the daily liquid micro taper to go down gently. I might slow down the taper but I think this is so brutal, what's the point. Today is a hard day. I am venting but I am still living, Going to go do some amygdala retraining and report back the results. My posts will be looking very different once I engage in that program as the premise is you can't talk, think about symptoms. I know it's very hard as many of us become obsessed with our tapers, and obsessed with our symptoms. Just focus your attention elsewhere, anywhere--on your dog, son, work, tv, the trees, the summer breeze, the ocean....
We need meetings where many of us can connect and share our stories.
Calling all angels. Please help me get through this day.
My body feels weak but it will be strong again soon
My mind feels fried but I will laugh and feel connected once again
I have to have an inner coach-- You are not your symptoms, this is not forever, you are not ruined. You have to be broken down into little pieces so you can be whole again in a new and different way entirely.
You can do this.
Challenge yourself to visualize yourself well
For 20 minutes each day.
If you can rest, lay down.
Imagine a safe place, and place where you feel at peace, in harmony with nature and your spirit guides, animals, angels, grandparents or anyone/anything magical and comforting to you in the most idyllic place imaginable
Imagine yourself at your strongest, fittest, healthiest and happiest in body and mind
You will get there. We will get there.
This is temporary and this too shall pass
The way I describe this experience is fear on crack. It is so hard to explain 'benzo terror' to anyone who has not endured it. It's like the feeling one might get if you get a terminal diagnosis or an oncoming bus or train is ready to hit you. That feeling stays on and on and on and tortures you. The beautiful thing is that those who have recovered struggle to remember what it felt like--I guess a little like childbirth or chronic pain. Once it's done the mind protects you from feeling that again.
I have been researching and purchased some of the amygdala retraining work by Ashok Gupta and DNRS by Annie Hopper. I find it puts me to sleep, which is a good thing but it's hard to stick with because I find it boring and I don't have CFS or MCS or any of those issues so I wonder how applicable the training would be in this scenario. I think it can help us heal if we do not think, talk, behave sick. I went on a long walk today, sat with some girlfriends and worked. Normal day. I know in acute that isn't possible, I have felt that before.
I am committing to starting the training......tomorrow?! I believe that neuroplasticity can help and occur at any time, even during benzo withdrawal. I notice that my thoughts and feelings 100% influence my symptoms. My Buddhist mentor who has been thru hell and back with addiction has said benzo w/d fucks with your mind--it's 50 percent psychological and 50 percent physical. I don't know but It makes sense. The trick is not panicking when one is symptomatic and just saying HELLO YOU UGLY BASTARD PANIC CHEST PAIN ETC ETC , Hello! You aren't going to kill me, and if you do, then so fucking what.
The problem is a tiny little emotion becomes a volcano of feeling, panic attacks, self-doubt and that feeling of oh no, here we go again. The stress response is on ON and it takes a good 10 days to calm it down. I just wrestled with this panic for the last 25 min doing meditation and deep breathing and tapping techniques. I will post some helpful videos about this. It may seem silly or weird, but right now just bring me anything and everything that works to calm these adrenaline rushes that continuously stream my nervous system.
Parenting in withdrawal is hard. It's hard to feel disconnected from your children, disconnected from yourself. I can 'act' like myself, 'talk' like myself but I am not myself. It's like I keep reaching and reaching to get ME but I can't and wonder if I ever will....
Things I am grateful for:
1. I am alive. Another day.
2. Confronting my fear of death head on
3. Re-engaged with spirituality
4. New connections with fellow travelers
5. Humility and compassion for those that have traveled this road before
7. Reassessment of my priorities and slowing down
8. Bravery and resilience of the human body and soul
9. My children
Things that SUCK:
1. Feeling crazy and being a live wire
2. No off switch
3. Having to carry on with life, business as usual
4. Parenting in this state-what this is doing to my family
5. Pretending all day, every day
6. Having very little validation or understanding from doctors or others who have not experienced this (or for people that have not had this problem when getting off their benzo)
7. Self -doubt,. Constant back and forth about what to do and which direction to go in. Lack of trust in doctors or any kind of medical treatment (detox)
8. Feeling alone
9. Having to have patience
10 This shit BLOWS.
I believe there is a purpose in this! What the hell it is? We wlll see. For those on this journey, let's dig deep and find our purpose around this.
I love this woman, This is the best benzo advice out there--and I love the emphasis on
"You are not gonna die, You are not dying". This is someone who gets it. Thank you.
If you are in benzo withdrawal there are some pretty FREAKY videos on the internet that I wish I had NEVER seen. But I have a morbid curiosity so I would click on things you really should never click on. One woman was panting and rocking 22 mos after being off benzos. I have that image seared into my mind. Holy shit, am I going to be brain damaged forever? Benzo Buddies has been an enormous help at the beginning of my taper, but then became a daily obsession. Again, I was drawn to the absolute worst case stories on the site. One post actually said-- "If you are anxious don't click on this post".. so what did my stupid ass do? I clicked right on the post and it scared the beejeezus out of me. As one guy put it, Benzo buddies are a lot like benzos--they give you relief at first then they do the opposite of what they were intended to do...
Once I accidentally cold turkeyed ( I was taking .5 Ativan three times weekly), then 6 weeks later fast tapered (with no help of a doctor whose specialty was tapering people off meds,...yeah right..) I had serious PTSD. I had kindled, shocked my nervous system several times. I was horrified that I couldn't get off. I didn't realize this would be another year long adventure into benzo hell, a true underworld, where life becomes fuzzy and you feel like you are on the verge of insanity, crippled with an fear that is indescribable to anyone who has not experienced. Imagine being on meth, ayahuasca, and LSD all at once but the trip just fucking goes on and on and on.... Every normal part of life, your kid crying, someone giving you the finger in traffic, getting bitten by a dog (yes, this did happen to me in cold turkey- I was emanating fear), just getting in the car to drive, meeting someone new, fills you with fear and adrenaline rushes. We are brave souls.
So my advice is this--once you have your taper information, limit your time on benzo sites, limit the number of horrific videos you are watching and fear mongering. It doesn't always go badly, and most of those people who recover don't bother talking or posting about it. The fear activates the amygdala and creates a kind of kindling of it's own. We are getting better day by day. I have to believe this. And this wise woman says it right, we are not dying. You are not going to die.. I have surrendered either way. I read one guy say that the gift of benzo hell was it took away his fear of death. I feel that way too.
I have recently been drawn to the work on Christina and Stan Grof. Their book is all about "spiritual emergency" and the dark night of the soul. I have spoken to many people on the other side of benzo withdrawal, and one man said to me, "this is spiritual my friend, this is spiritual". All have given me hope that this dark journey will have light and deep transformation at the end of it. It's grueling, I am not going to lie. Grueling. Depersonalization, derealization, terror, blind terror waking you up in the night, and mind you, I am still tapering... I will get into those details soon. I have also noticed that all of my underlying conflicts, all the demons I have wrestled with and tucked away are rearing their ugly head. I have no off switch. The other night I experienced a kundalini like experience in my sleep. I had surges of energy coursing up my spine to my crown and down the front and I was literally shaking shaking shaking in tremors for what felt like hours. Not to mention seeing visions and hearing voices. Friends, I have no prior mental health history. Just neurotic anxiety. This shit is crazy time, I actually surrendered to it and let myself just shake and shake in this half wake/sleep state. I had had intense anxiety that day and I think my body needed to discharge all of that energy. I hope there is a greater purpose in this all.... we will find out. I am almost half way through my taper and managing to crawl thru my life but not doing it very well. I haven't laughed much since this whole ordeal but I recommend distraction--- comedy, movies, books, walking, anything to ground you and remind you of who you want to become.
Breakdowns can be breakthroughs right?
Carolyn Myss poignantly says, “don’t ask why this is happening to you, but maybe this is happening FOR you”. Or maybe it was Mastin Kipp. Idk. I have benzo brain right now. I am an accidental addict. In fact, the fact that I am even an ‘addict’ makes me laugh. Like, god, are you kidding me?? I haven’t had a drink in over twenty years (not because of sobriety but because I have a condition called Interstitial Cystitis), when I smoke pot (which was a good decade ago) I start to shake and tremble, I don’t smoke, drink green juices, avoid prescriptions and antibiotics like the plague, do yoga (or at least used to), walk, meditate..so how did I get here?
Like many of you accidental addicts I got here by accident.
25 years ago when I was in my twenties and developed a pain in my bladder that kicked me to my knees I was given a million and one prescriptions. My urologist prescribed valium, “don’t worry, this won’t be a problem at such a low dose, use it 3x per day”. Not even knowing what alternative medicine was at the time, being a dutiful Jewish New Yorker who believed in doctors and their word, I did what I was told. Thankfully, when others tried to push Vicodin, anti-seizure meds, antidepressants, you name it, I said no thank you. Some people say I am stubborn. I think this stubbornness saved me from having a morphine pump put in and becoming addicted to pain pills. I endured it. Year after year. I am talking 8 years. Every day. Relationships fell away, friends at some point felt “ I wanted to be sick”, but in the meantime I pushed on… fighting a silent battle that no one could see.
I went to grad school, built a business, worked around the clock, some way somehow I did it. And I did it in excruciating pain. IC pain has been compared to end stage cancer pain. I can tell you, it brought me to my knees shaking more than once.
Back to valium. It was in my life, at first daily, and then when I went on disability infrequently but it was there—always at low doses and definitely during ‘flare ups’. My dog even overdosed on my valium –but all the while I never gave those little pills a second thought. I would go on/off them seemingly with no problem…. Yeah… right. So I thought.
I was 25 when this first dark night of the soul happened, It started with bloody violent dreams of death and terrorism. I knew intuitively that the freeze state I had been living in for my whole life was now starting to thaw. It had to. I wrote a poem and crumpled it up, not wanting anyone to see or discover anything about me. I had lived a life up until then as the "lost child"--perfectionistic, don't talk, don't feel, don't see me. I didn't even know this was the beginning of a spiritual journey, for years I thought it was just a medical issue I needed to fix but couldn't. Then by 34 my pain miraculously lifted. I was in a new relationship that I felt safe in, I was desperate to get well. I had read all the right books, meditated on my chakras, gone to healers, gurus, mystics and medical intuitives. What was I missing? With the help of elmiron and ozone therapy, I got into a remission at last.. Other factors too that helped which I will get into. At about 18 mos or so I stopped thinking, talking, feeling pain. Now I was still fragile and scared it would re-emerge but once off the drug (elmiron) after 2 years my remission just stuck around for 7-8 more years.
Valium was no longer in my life. Pain was no longer in my life! I was free! Slowly but surely I went from being sick to well yet still having the scars of that relentless experience. I was still careful with everything I ate, shunned wine, coffee, chocolate, sugar and so many other things.. not having pain was a gift in itself, I never felt deprived , I felt so BLESSED I was one of the recovered ones. Why can others just move on and let go of traumas? I know many people who suffered from many things equal or worse and move on psychologically,emotionally and spiritually. For the most part I did. I got married, traveled, started drinking decaf coffee (anyone who has IC will knows this is big!), even indulged in sugar here and there, but I was always cautious but free. I no longer thought about illness or doctors, or my pain pain pain. That chapter was over. My new friends never even knew that this was a part of my experience at all. I would mention it here and there but unless you have experienced it, there is no point in talking to others about it. It feeds the pain, and creates alienation because people just look at you like you are crazy. The valium stayed in my cupboard and when friends came over in crisis I happily gave my ‘stash’ away if they needed it. I was happy. I was content. I felt like one of the lucky ones. I made it out of this illness and created a big full life for myself.
So what happened to lead me to this blog?
Enter infants, sleepless nights, anxiety about sleep deprivation, money, kids, lack of connection and constant illnesses, frustration, working to the point of exhaustion… then it happened. I took a course of Cipro and my pain came back with a vengeance within 5 days. My beautiful wonderful 8 year remission was broken. I felt broken. Betrayed. Enraged. Terrified. “ I can’t do a decade of pain again” I kept thinking and saying over and over again. My relationship had been strained for some time and was about to be put under the test again.
But my amygdyla was already firing ANGER ANGER FEAR FEAR FEAR HELP HELP HELP oh no not again….
Once that switch went on, it was hard to turn it back off. My whole body became dysregulated. Now I also know benzos interact with this category of antibiotics. I burned in places you shouldn’t burn for months. More than the pain, I felt terror, horror, dread. I had two boys at this point and was always afraid of being a sick mother and now, it was happening. I couldn’t stop my fear. The pain diminished over 6-7 mos, but many other symptoms continued. There was always something. Valium was still in my life, here and there as an innocent friend I didn’t realize was the ultimate poison that was destabilizing my nervous system. Still using it sparingly (once every two weeks who knows? Or in spurts?) I never kept track but those rescue doses count! I never felt that ahhhh feeling. I never looked for that ahhhh feeling. I just wanted my bladder pain to go away, and this was what I was instructed to use by a nice urologist back East. So I applied what I had been told again. And used it to help me sleep when I went out of town.
Somehow I don’t feel like finishing this story at the moment. I have switched gears. I am so used to memorizing this story, my trauma story, my benzo story, my wounding story, I know I need to get the details out and I will but I want to practice sharing my story and then RELEASING the story. Making up a new story as I go. As I taper down off this medication (easy to say when not in the thick of it believe me) it’s time to create a new story for me, my life and my children. Done with pain. Done with fear. Done with anger. I want more peace, courage, joy, liberation.
Just got back from my recovery group that involves meditation. I don’t quite belong there as most people in there are hard core addicts, purposely, deliberately getting loaded, over using their drugs, lying, stealing, cheating to get their drugs. Amazing stories of courage and struggle. But I don’t quite know where someone like me belongs…. In the rooms of AA? NA? No, not really. In these recovery rooms? No, not really, But it’s a place to feel less alone. These people certainly get addiction, detox, and withdrawal. They seem like they are built differently but that could just be me thinking I am somehow unique and different. Maybe we all are. We all have our stories and we all get to choose what we put our attention on each and every day.
I listened to Joe Dispenza today and got inspired. I had a talk with a fellow accidental addict and he inspired me yesterday. I was feeling so low. So alone, so down. I haven’t been seeing friends, socializing, I feel I can’t talk or be present. I am in a bit of a cocoon. But me and this other fellow traveler talked and it inspired me. I was on a hike and I got inspired to run up the hill, breathless, and cold but I did it. He told me-“stop acting like a monk, why are you beating yourself up for needing some relief or pleasure or connection?” I have shunned pleasure my whole life. Always on the outside of it. I want in now. I want to create something different for myself. This benzo freaking breakdown is pushing me to look deep within. I have done this before in my twenties, and now it’s come again. My whole life, my whole body needs an overhaul. Everything, I mean everything is changing. I am in acceptance of that in this moment. I am somewhat excited and scared of what is ahead. But I am ready….
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.