I’ve spent the last 8 months healing after weaning off a powerful drug: one that was prescribed by a doctor. It was a medicine that immediately did everything I wanted it to do — until it didn’t. Like a good patient, I took my pills as they were prescribed — nightly for 7 years. What I didn’t realize is that over time benzodiazepines destroy the neurotransmitters in one’s brain. To read Part 1 of my story, click HERE. This is Part II.
• • •
Beginning in October 2012, under the guidance of my psychiatrist, I slowly tapered from 2 mg of Klonopin (clonazepam) daily to 0.25 mg. When I couldn’t reliably make cuts by hand anymore, I switched over to an equivalent dose of Valium (diazepam) and continued to wean.
Ten months later, while my doctor was out of the country, I became confused. I’d always followed her notes regarding how to withdraw from the drug to the letter. Ever the compliant patient, I noticed her written instructions ended at .5 mg of Valium.
I assumed that meant I was supposed to stop taking the medication.
You know what they say about assumptions, right?
Big mistake.
What I didn’t know was that my doctor had planned for me to continue weaning using the liquid form of Valium.
At first, I didn’t feel anything.
I remember doing a little dance the morning I took my last pill.
Because I thought that was it.
Two weeks later, on what started out as a perfect August morning, I sat in my friend’s backyard, quietly freaking out. I was jittery, my heart pounded, my teeth chattered, and my body buzzed. The world didn’t seem real. I felt like I was watching a movie unroll before me. “I’m not feeling right,” I said.
Nothing could have prepared me for the hundreds of horrifying withdrawal symptoms that began ten days after I took my last bit of Valium.
Suddenly, I was like a snail whose shell had been ripped off its back; I was utterly unprepared for what it was like to be so raw and unprotected. Everything was too much. The world was too bright. Too noisy. People’s hands were too rough. My spine burned. My gums receded. My muscles wasted away. I developed memory problems, cognitive issues, emotional issues and gastrointestinal problems – none of which were present before taking the medication.
I started to document everything I was experiencing in black and white composition notebooks. When I look back at what I wrote during withdrawal, I’m aware my words don’t come close to capturing my desperation. My hideous symptoms read like a laundry list. I’ll try to explain things differently here.
To see other work by Luke Toth, click HERE.
Imagine the worst flu you’ve ever had: the nausea, the diarrhea, the muscle aches, the exhaustion, the inability to move. Got it? Now add in the worst headache you’ve ever had: one of those doozies where the lights are too bright, the sounds are too loud. Occasionally, I suffered from brain zaps, which felt like someone touched my brain with an electric cattle prod. Electronic screens pulsed with a weird energy that hurt my brain. Got that? Now add in a urinary tract infection infection: involuntary spasms forced me to go to the bathroom dozens of times each hour. Even in the middle of the night. Got that? Factor in a never-ending insomnia. Every time I tried to sleep, I was awakened by a ringing in my ears. Or the sound of an imaginary door slamming. Or the sound of an imaginary train. Or muscle cramps. Sometimes I drifted off, only to awake a few moments later having had a horrifying nightmare. Now add in a crushing depression. I didn’t want to be sad, but absolutely nothing brought me joy. Nothing. Got that? Now imagine you’ve slipped a disk and thrown out your back. You know how awful that is, right? Well, that’s how deep my spinal pain was. Paradoxically, despite the pain in my lower back, I was unable to sit still. I sat criss-cross applesauce and involuntarily rocked for hours.
This went on for 90 days.
If the physical pain caused by stopping the medication was a journey to Hell, the psychological symptoms triggered by the withdrawal were equally terrifying.
Suddenly, all these intense fears I’d never had before bubbled to the surface. And while a part of me was aware that my fears were irrational, I was powerless over them.
I’ve always been a social person, comfortable speaking and dancing and generally carrying on in front of large groups of people; suddenly, I was certain everyone was looking at me and wanted to harm me. As a result, I became unable to leave the house and isolated myself for weeks.
Suddenly, I was afraid of the car. Driving was impossible, and it was equally awful being a passenger. Each time I had to go somewhere, I was certain I was going to die. I gripped the front seat, white-knuckled, and wept.
For a while, I developed hydrophobia. Normally a lover of a long, hot shower, I was afraid of water and avoided bathing for days.
Everything I put in my mouth had a weird metallic taste or smelled like cigarettes, and I developed a fear of food. I also lost a lot of weight and became dehydrated.
After two weeks of existing without sleep, I found myself alone and sobbing in the basement in the middle of the night. I crept upstairs and awoke my husband who had been fast asleep. I told him I was afraid and asked him to hold me.
“I can’t do this,” he said. “I don’t know what to do to help you!”
After my husband went to work, I squinted behind burning eyes, researching “benzo withdrawal” on the Internet. I was shocked to find entire websites and thousands of threads in chatrooms devoted to the topic. I called my psychiatrist’s office to inquire about what I could do and, the on-call doctor encouraged me to go to the Emergency Room if I thought I might hurt myself.
Somehow, I had enough sense to know that if I went anywhere I was going to be locked up, possibly restrained and probably poly drugged with all kinds of psychiatric cocktails. I worried ER doctors might reinstate the Klonopin, the medication I’d worked so hard to stop taking. That thought scared me to death.
I figured I just had to hold on until the withdrawal ended.
It can’t last forever, I thought to myself.
renée a. schuls-jacobson 
So glad to see you back, and hopeful that you will be close to the same person I enjoyed getting to know through your blog. I became so busy with life that I lost track of you, so seeing you post makes me smile. Isn’t Misty great? I just love that woman. I’m glad you gave her a shout out…maybe that was on the part 1 post? Lol, whatever. We need another Tech related contest to cheer you up maybe!!
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Hi Don! I saw your recent post. I’m just starting to get back into the swing of things again. Yes, Misty is amazing. And so are you. Thank you for sticking with me during this weird time.
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Oh, Renee. I am speechless.
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Thank you, Dawn. I’m definitely on a journey.
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I’m working on withdrawing my SSRI medicine, and I remember reading what happens when you quit cold turkey. Terrifying. I can’t imagine what you have had to go through, and I hope you are getting better.
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Take is slowly, Sarah! I’m not sure what you’re taking. It is possible to get off these medications, but there is definitely a right way and a wrong way.
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Yes, the doctor talked me through it. I will take it slow. Your post has definitely helped me realize that – especially since the brain shocks are a possible withdrawal symptom for my medicine as well.
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Scary stuff 😦 I’m glad you are feeling well enough to write again.
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Hi Annie! Yes, I’m finally starting to type again. I’ve been journaling the old-fashioned way during the entire process. Thank goodness I have all my weird notes. Can’t wait to share some of it with everyone. Hopefully, it’ll help someone along the way!
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So glad to see you blogging again, Renee! What torture you have been through. You are a strong and brave lady! {{{HUGS}}}
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Hi Kassandra! Thank you for being in my life. You have been so supportive during this crazy journey. I’m still in it, but it’s getting better every day. And I’m so grateful for this opportunity to, perhaps, help someone else who is trying to get off these powerful medications.
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Oh, I can totally relate to many of your feelings and fears. Bless you for enduring so much.
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Kath! Thank you for the commiseration. I know you’ve been struggling with your own illness. You are a warrior. And it is all about radical acceptance, right? I’m still in this mess, but at least I can write now. I’m grateful for that.
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So sorry to hear about all you’ve gone through! It sounds like living hell. And big thanks for having the guts to tell your story. It’s such an important one. Far too many people take these drugs.
I was really excited to see your name in my inbox this morning. Welcome back! I look forward to more posts from you. I hope that you’re through the worst of it and life is looking up again for you. Sending you a virtual hug….
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Hi Ann. Thank you for the warm welcome back. I would like to believe I’m through the worst of it. I’m nowhere close to the way I was before withdrawal, but I’m much better now than I was 7 months ago. And for that I’m grateful. Thanks for the hugs. Be over to check on you soon.
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My heart aches for that woman. I know that you have moved past most of that, but what a horrifying and terrible thing to have had to experience. All because of a prescription medication and its effects. I just want to hug that rocking, terrified and pain stricken lady in the basement. So glad that is a thing of the past, but so sorry you had to go through it at all!
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I wish you had been there to hug me. That’s all I wanted. The whole experience has been terrifying. I’m so grateful to you for sticking with me during this nightmare. Your cards and letters made me feel so loved. You are truly one of the angels in my life.
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I think you are very brave to tell your story.
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Hi Tania. Thank you for stopping by.
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Wow, Renee, I had no idea that symptoms like this could occur from withdrawal from prescribed anti-anxiety meds. After your part one post, I looked up my med that I’ve taken for years and it’s not a good one for withdrawal either.
I’m sorry you’ve gone through all of this. It sounds like you were hit with every symptom on the list. I look forward to your next post and hope you’re feeling better with each passing day. Lots of hugs, Sherri aka Sprinkles 🙂
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Sherri! My beloved, Sprinkles! Thank you for checking in with me. Yes, withdrawing from anti-anxiety meds can rally throw people for a loop. I don’t know what you’re taking, but most SSRIs have withdrawal syndromes. Not all medications destroy your neurotransmitters, but if you have questions, I’ve found it’s much better to look online rather than trust a doctor. Most doctors are very good at prescribing: not so great at helping people get off the meds.
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Being a very anxious person, my medicine has helped so much, however, I agree with you that we’re not really informed about the risks associated with getting off of it. I’m on a lower dose of Effexor and when it’s time to get off of it, I’m going to be very, very careful.
I’m so sorry that this has happened to you. It must be terrifying. Will your neurotransmitters eventually regenerate, or will this cause permanent damage? Thank you for sharing your story. You really are helping other people, like me, who have been taking SSRIs and not thinking at all about what the consequences could be. Take good care of yourself! 🙂
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Sherri: It’s my understanding that my body will heal. It just takes time. I’m doing so much better at 8 months off. The thing is, I had a very controlled wean. Many people don’t have access to this kind of information because there is so much stigma associated with these kinds of medications. I’m not ashamed at all, and I PRAY that the information I can provide will help prevent someone from ever starting these meds in the first place. Meditation, yoga, and other mindful practices can make a world of difference. And, of course, it is important to address what is at the root of the anxiety. I’m starting to deal with that mess now.
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Thank you for this info. I just talked with my daughter about what happened to you. She’s in her third year of medical school and, thankfully, has learned all about this.
I’m glad you’re not ashamed about this, because you shouldn’t be. There is so much stigma associated with anything having to do with the mind.
I’m also in the process of addressing the root of my anxiety with a counselor. I’m finding exercise to be a huge help to me as well. I wish you so much success on your journey and much health. 🙂
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So I suppose for the rest of your life, if a rude person tells you to “go to hell,” you can retort “too late…been there.” Unbelievable. Your gift for expression paints a horrifying, vivid picture, and I’m sure I’m only really understanding the tiniest taste of what it was really like for you.
Though I only know you through brief internet scribbles, I truly hope and pray this story has a peak, or at least a hillside, that is above the darkness of the deep valley you’ve been through. You have (temporarily) disengaged my usual desire to quip. Take care.
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Hi JT. At 8 months out, I’m still on this journey. I’m better than I was 7 months ago, but I still have a long way to go. It’s my understanding that it can take 12-18 months before I will feel better. Hopefully, I’ll continue to improve. Sometimes I don’t feel like I’m moving forward, but I know I am. You are a gem for staying with me.
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I was talking to a cancer survivor the other day who said his experience with cancer was a marathon, not a sprint. You are on one tough marathon of a different kind.
It makes me think of the Churchill quote, “Never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.”
I don’t know if it’s entirely applicable, but one always sounds more intelligent when one quotes Churchill, yes?
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It’s absolutely applicable. And I think he has a few more “nevers” in there and adds that we should never, ever, ever, ever give up. I’m definitely on my own marathon. Even in the throes of this mess, I’m so grateful that the prognosis is good. With cancer, this isn’t always the case.
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Renee, I know I don’t begin to have even a surface understanding of what you went through, but I really appreciate your willingness to share your ordeal with us. I agree with JT. You HAVE been to hell and back. I thank God you had a husband and friends who stuck with you through all of this.
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Hi David. Truth be told, I’m still in it. I wish I could say I’m back — but I am a spiritual person, and I’m just feeling grateful for being here. I’ve been in such a desperate place for so long. These days, I’m just glad to be alive, to be home, to be back with my son, to have the opportunity to reconnect with old friends. Thank you for sticking with me through thick and thin.
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It’s the desire of my heart to love and help people – especially a Jewish woman who reads my Christian blogs without wanting to start an argument.
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David! I have always lived your posts. And more than ever, I have connected to my Higher Power during this crazy time. I know G-d wants me to thrive. This whole journey feels like it’s part of G-d’s plan. Truly. I’m so grateful for your friendship. I’ve been reading you all along. Are you all healed?
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Healing. Still pain from time to time, but nothing like early post-op. Regaining strength in that arm and shoulder, too. Thanks for asking.
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I feel for you – not at all in a pitying sense, but in a way that fills me with compassion. 90 days of this??? It had to be horrible. You’re still on my prayer list and will stay there. Take care, and may the light shine brighter each day. 🙂
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Hi Diane: I’m still in the throes of this. So yes. I suffered 90 days of acute withdrawal… and now I’m in what’s called Protracted Withdrawal as I’m still suffering from a bunch of miserable symptoms. And yet. I’m grateful to be here. I’m so much better, and I’m trying to focus on that. Thank you for sending me all that email love. I really appreciated your checking in on me.
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wow. wow. so glad that that’s in the past for you. wow. 😦
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Hi Mama! I’m still in the throes of this thing. That said, I’m so much better. I’m praying that I’ll be even better by the 1-year mark. I’m just so grateful to be alive.
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Renee, we are very aware of what you are going through and we pray for you everyday. G-d is by your side. We love you unconditionally. We hope you are feeling better with each passing day. We send thousands of hugs and kisses to you.
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Thank you for the prayers. Means the world. And I totally believe in the power of prayer.
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Keep going girl! You got this! ❤ Love and hugs to you.
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Hey girl! I need to call you! Is it okay if I mention you by name in an upcoming post? You are truly one of the angels on my journey.
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You are describing your misery so effectively that I can almost imagine your hell but only if I multiply it times 1,000 and even then, I can’t really imagine.
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Hi Maria! How I have missed you. I just read one of your recent posts, and I see that you’ve been having a tough go, too. Thank you for thinking of me. I’m not out of this mess yet, but I’m healing a little bit more every day. Feeling grateful for being alive.
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It was definitely a rough winter, Renee but I see the light. Even a little glimmer is hopeful. Glad you are healing every day, I have missed you tremendously! Keep up the good work and be kind to yourself. 🙂
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Thank you, darlin’. This winter has been hellacious, that’s for sure. Like the crocuses that should appear any day now, I’m hopeful that — one day — Spring will come back to me.
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Wow, I am speechless. How can a controlled wean off be that bad! I felt the pain while reading and I’m sure it doesn’t even compare to what the real thing was like!
Glad to hear you are better than that right now and on your way to getting even better. You go girl!!!
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Nice to see you back. As the saying goes, “You’ve come a long way baby!” Keep up the good work and continue to get healthy.
Nelson
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I think you found the book you’ve been waiting to write . In the process you’ll help not only yourself but many, many people
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I’m not looking to write a book right now. Right now, I’d rather share the information with folks for free. Hopefully this information will help people to make more informed decisions. Thanks for being here for me during this journey.
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Reneezaaay! You’ve been to hell and survived the trip. I can’t even imagine going through that day after day. Glad you’re back!
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Sooooooz! It’s so nice to see you here. I’m grateful for your continued friendship. I have to say I’m amazed by YOUR strength! How are you? How are your boobies? 😉
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I’m rockin’ the bionics now, thanks! 🙂 Other than a stupid cold, I’ve been in the trenches writing my butt off and am glad to see you are too! It’s great therapy don’t you think?
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Weaning off medications is hard work, and when you mess up, I have, it is exceedingly painful just as you have described. I’m glad everything worked out for you.
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Catherine, I’d be interested in hearing about your weaning experiences, if you’d like to share. I’ve still got a bunch of symptoms, but I’m grateful to be alive. And I’m healing a little every day.
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❤️ Have kept you in my heart’s prayer and glad to know you are back. It has been one hellacious winter, the likes of which need not return. I went to Gro-Moore last week and walked around their greenhouse to catch a whiff of spring. A friend celebrated the appearance of earthworms last night. The next gift will be the sound of peepers. It is truly the little things of life that give us joy and remind us to be grateful. ❤️
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Holy shit woman … massive hugs, keep on sharing …
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Dear dear Renée … SO good to see you back with these posts. Sharing your terrible experience must be hard at times but I have no doubt you are going to provide help to many others through it. I’m sorry your struggle isn’t over and hope you realize just how many of us have been keeping you close in our hearts and minds. I also hope you realize the power in your words. Just amazing!
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Renee honey, thank you for sharing your ordeal with us. My heart aches for all you have endured. I’m in awe of your resilience. Hugs and prayers as you continue your journey!
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Oh hon.. I suspected, but living so far away, I had no idea it was that bad. ((HUGS)).
I’m glad you’re writing and sharing it so it may help someone else some day.
And I hope to “see” you again.
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Renee, such a moving account of your ordeal…wishing you continued healing and a return to health. Glad you are feeling grateful and sending hugs your way.
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Renee-I wish I could run across the street and hug you right now! It is so brave of you to share your story with all of us, and just know it is helping many others–you are a strong, amazing woman and I know you will continue to heal-Love you Always!!!
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I’ve heard that withdrawal is triple f*cking hell.
You described it in a powerful, heartbreaking, dark, amazing way, Renee. In a way that only you can…
Holding you close in Minnesota. xx
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Holy . .. wow. While writing about this may be somewhat helpful for you, I am certain that someone, probably many someones, will read this and find comfort or courage or something else that they need to fight their own battle. Your gift with the written word will serve others beautifully. Thank you for that. . ..and again, welcome back.
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Oh Renee, this sounds incredibly dreadful. I’m so glad you’re going public with your experience. It is terrifying!
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Renee, my heart absolutely clenches in empathy and compassion reading this. One side of me cheers for you, that you are here, that you are writing, that you are back at least some of the way back. The other side of me wants to run to your side and prop you up if you need it, knowing you likely still need it. I am simply glad you are back and writing again.
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Horrifying Renee. With all the physical side-effects you were experiencing, I can imagine the mental anguish you must have been experiencing; unbelievable! Then scared to go to the ER of all places!? Wow. I hope you never have to go through something like this again. It made my skin crawl just reading it.
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Renee, you are so good at this. I know what I felt while reading it needs to be multiplied to the Nth degree to even come close to your actual experience, but you certainly hit me right between the eyes with the skill of your writing.
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Oh Renee…sweety I am SO very sorry for what you have been through in the last months. I am glad you are way better..even though you are not 100% yet. I’m sure you are well on your way! I’m also glad you are writing again. I will be thinking about you and praying for your continued recovery! 🙂
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Looking forward to part III – but horrified by part II. And brain zaps – I know what those are like. I got them when I came off a brain med 15 years ago.
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Welcome home! You were missed, sweet friend. *hugs*
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Thank you for sharing your story. I wondered where you had been. Here’s looking forward to better days.
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Nikki! I’m so glad to see you here! I’m getting better, a little bit every day. Hope you are well! Thanks for sticking with me. xo
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I found your blog from a benzo withdrawal support group on Facebook. Thank you for sharing your story. I love your writing and am immensely empathetic to your past ordeal. I took my last little snippet of Lorazepam after a particularly long taper schedule, and I feel the symptoms you describe (I always describe it as the world’s worst hangover that never ends), but they’re not so bad due to just how slowly I’ve worked with my doctor’s internist to do this. We had to completely start over because I’d been going too fast with it. Thank God for the internet; otherwise, I’d never have known about the Ashton Manual, and hell if any of the doctors in my town have either.
My experience is here:
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