Eight months into a terribly managed taper off the clonazepam I had taken for eighteen years (like most doctors, mine were benzo-ignorant), I trusted a doctor who claimed he could stop my suffering. Desperate to function normally again, I followed his advice to stop taking my benzo and detox at my home with some phenobarbitol to ward off seizures. He reassured me I would feel better in a few days. Eager to put the last eight months of torture behind me, I followed his instructions. Seventy-two hours after swallowing my last benzo dose, I was rushed to the emergency room. I spent a week in the hospital hallucinating, burning, tingling, twitching, and experiencing terror that I didn’t know was humanly possible. Nor did I know my brain could produce such horrific intrusive thoughts while simultaneously playing an annoying song in my head over and over and over again.
Once home, I thought the worst was behind me. Surely I would feel better in a day or two. (I know. How naive of me!) Without going into the gory details that could trigger anyone, I was a mess. I’d be back in a hospital for a long weekend at four and half months off and then a six-week stay at an out-of-state facility. I came home from that place still as symptomatic as when I went in. But I had done one thing that helped shape my recovery journey— I promised myself I would not reinstate nor would I harm myself. I also promised myself that I would heal from the things that prompted me to seek the help of a psychologist or psychiatrist. I yearned to be anxiety and panic free. I yearned to be whole.
My journey to reconnect the pieces of me that had been broken off from my authenticity due to ACES, Adverse Childhood Events, wasn’t an easy one. It was fraught with fear and uncertainty, pain and sorrow. Yet, I kept turning toward the greatest healer of all: love. I tore out my front yard and planted a flower garden filled with the most exotic blooms I’d ever seen. I hung a bird feeder and installed a fountain. I fed the squirrels and crows nuts and put out a bowl of water and treats for the dogs being walked. I turned to life! For the most part, I found a way to get out of my own way and allowed myself to be carried by the unstoppable force of spirit. You, too, have this force within you. Your benzo did not nor cannot touch the spirit inside of you.
Your mind may tell you all sorts of negative stories, but that is just the result of your nervous system being in the protect state, which creates those types of thoughts and feelings. Remember about the polyvagal theory I’ve blogged about? State drives story. The state of your nervous system creates your thoughts and feelings. In the protect state, which we are most of the time in benzo withdrawal due to the downregulated GABA receptors, our thoughts will be negative. In our default state, the connect state, our thoughts and feelings will be positive. Don’t believe your negative thoughts, believe in YOU, your inner-being that the benzo didn’t alter. (One way to think about thoughts and feelings is to view them as fish swmming around in a pond. You are the pond! You can compassionately hold all the fish, even the negative ones. Just observe them going on their way instead of believing their negative narratives.)
One of the things that helped me turn towards love, allowing spirit to buoy me along, was curiosity. I continually asked what I could do to add to creation, to help, to forgive, to create, to spark joy, to be in awe. Sure, some days I wallowed in self-pity, but eventually I’d pull myself up and out of that quagmire and get back to the work of recovery, of trusting love to lead the way.
This is not a well-written blog, I know. I’m struggling with forming the essential message. What I want to share with you is the knowledge that you can trust that you are powerful. You are unstoppable, even on the days you feel all is lost. Keep going. Trust that your spirit is intact. Trust that life and love are the greatest healers and teachers. Embrace them with all your might, heart, and soul.
Know that benzo withdrawal is a season, and like all seasons, must give way to the next. Patience, acceptance, gratitude and distraction help us wait for the seasons to change. A beautiful season is just ahead, I promise.
Ask yourself what you can be curious about. What can you be in awe of? Who or what can you be in service to? What can you do to let go of all your shoulda, woulda, couldas and let love/spirit lead the way? What do you need to be able to listen to your truths and not your negative thoughts created by your hyperexcited nervous system? What can you do to KNOW you are unstoppable? What might you change in order to extend love and compassion to yourself, your brain, your body, your nervous system?
From my very full and grateful heart to yours,
Dr. Jenn
Thanks for this encouragement today, Jenn. I really needed it. I’m 4 years and 3 months Benzo free and going through a wave. It’s hard to believe I can still have symptoms after all of this time.
Sandy
Thanks for your continued support and encouragement!
This was a great post. It helped me understand my son’s 24/7 ruminating and thoughts of despair when he was in interdose withdrawal from Xanax. My son was poly-drugged, with one med after another added to treat his “mental illness,” which was actually all drug-induced adverse reactions. He very quickly tapered or cold-turkeyed off all his drugs in late spring 2020. After a terrifying 18 months of withdrawal anhedonia, he survived. Thankfully, he never experienced seizures when he stopped the benzos. But at various times he was suicidal, homicidal, and catatonic. They were prescribed for “anxiety disorder” for akathisia caused by the antipsychotic prescribed for the mania and psychosis caused by antidepressants. Since the
end of withdrawal in the early fall of 2021, he has been thriving, slowly gained his physical strength back, got a new job with a raise and then another new job with even more responsibility. Ironically, Covid saved his life because he was able to work from home during this nightmare. Had he had to go to his office, he would have lost his job and all future hope of supporting his child. Having a child kept him from killing himself, though it was close many times.
I booked a 15 minute appointment with you when he was in the throes of Xanax interdose withdrawal, and what you said confirmed my belief that he could survive this and that I needed to keep him away from hospitals where they kept piling on more meds (or, at one point, simply stopped his klonopin. Had I not found a provider to reinstate it, the putcome might have been tragic). He was so sick, so sure that he was beyond help, and so distrustful that he would not reach out to you himself.
For three years, my life revolved around keeping him alive and out of hospitals, driving an hour one way to his apartment most days a week and caring for his child. Now we have to protect that child, who is autistic and was traumatized by what happened to his father, from this diabolical system. So it is never really over. I am deeply indebted to all the survivors and good professionals who have shared their experience and spoken out. My life will never be the same on many levels. To save my son, I needed to leave my tenured academic position and move cross country at a time and age when it is impossible to get back into that field at the level I was. My spouse worked two jobs, 7 days a week, for three years straight to make it possible for us to help my son stay alive and keep custody of his child. And there are so many who had so much less, no support, no help, no recourse. I have done what I can to encourage people who cross my path, all the way to Malaysia, and direct them towards safe help and let them know at this will pass, they are not crazy, they are correct, the drugs did this.
I am so angry about the continued denial in the medical and mental health profession about the harm these drugs cause. I want to lobby for new informed consent laws in Washington State. But gathering enough testimonies from individuals in this state to get legislators to listen or care is difficult.
My heart hurts to hear of your son’s and your family’s suffering due to meds and the ignorance of the medical community. Sadly, it is a story too often told. I am happy to hear that he is once again thriving! I hope, as time passes, the emotional wounds will heal for all of you. What a wonderful mother you are to sacrifice so much for your son. And your husband, too. Sending you all much love.
You are most welcome!
Sorry to hear about your wave. They can happen until our receptors are all bright and shiny again. And they will be, at some point. Use all of your coping skills to navigate the symptoms. They will pass in time. We are here for you.
Jennifer,
Thankfully, we have people like you. My new doctor is really educated on benzo’s but he also said my brain would never heal. That I would be like this forever. I sank with the words and at that moment I believed him. I have to go back and read things like this to gain back faith that my transmitters will be bright and shiny again.
I appreciate your blog so much. Often when I am struggling in a wave and my brain is yelling that something horrible is happening and “I can’t do this anymore”, I come to your blog, type in a symtom on the search button and get a better perspective. I appreciate getting your new blogs by email as I need reminders that “I can do this”! Today’s blog is a reminder of how far I have come. Thank you,
You are most welcome! I am glad my words are helpful. You HAVE come so far! keep going. We are here for you.
I am so sorry a doctor would tell you such nonsense! We do heal! Our receptors up-regulate. GABA and glutamate become balanced. Too much glutamate, which is the case in benzo
withdrawal, the “adhesive molucule” nectin 3 protein binders break down and the spacing between the neurons isn’t maintained properly so energy and information
can’t flow correctly through the brain. So it makes sense why we have such strange things going on in our brain/mind/body. But as things go back into balance, those
symptoms fade away. Keep the faith! I went from being unable to spell, send a message on social media, remember what I did earlier in the day, etc., to writing books, creating websites,
going back to school to earn post doc certifications, and more! My brain is better than ever! Your’s will be too.
Ive been totally off lorazepam/ diazepam for one year after a previous year long taper. This last November thru end of January I felt better than Ive felt in 10 years. I was on and off benzos for 40 yrs. At the end of January with a convergence of health issues and emotional triggers I found myself in a state of anxiety, fear, depression, weakness and body aches which haven’t subsided. Is this a wave?
To have felt so free and at ease
and now to be thrown back into this lower state of dis-regulation in my nervous system is so discouraging. The only difference is my level of acceptance.
I was in your support group for 2 years. Mornings with Jenn.
I appreciate all the work you pour into this community. You blog offers an immeasurable amount of hope.
While I was about 50% healed living my small safe and manageable life… I hit a dreadful setback that catapulted me back into survival.
Nothing changed. I took no medication.. I didn’t have a procedure, didn’t hit my head and wasn’t sick.. Here I am list in the darkness that you helped me out of many times.
The impairment of this setback has me baffled but being stubborn I refuse medical treatment.
4 years out and just gone again. I’m grateful I can articulate my thoughts, and distract but the intense neurological symptoms are so awful In have to stay indoors with no stimulation. Even visitors confuse me.
Sorry I rambled. It’s good to be heard and understood.
Be blessed.
I’m so happy Jen I spoke to u 2 weeks ago , I feel that I alternate between extreme Sadness and extreme anxiety and everyday pushing hard not to believe that I developed a new anxiety disorder or panic disorder, I truly miss a time where I didn’t have to worry about my thoughts and feel serene and carefree, reading your posts makes me assured that this day will come again . I had those days jn windows but fighting not to go in a panic attack every minute is exhausting to say the least. Also the unpredictability is a killer. Do you remember what did you feel as you oozed out of your setback to back being healed ? Do you feel the thoughts u had while in your setback once your healed where laughable ? That’s what I’m hoping to see one day. Please continue posting , I eagerly await your writings.
Thanks for your post Jen. I have a question about dental appointments and dental work. I have a fear of dentist and needles (don’t mean to trigger anyone here). When I go to dentist, they prescribe a benzo (triazolam) to take prior to my appointment. Do you have a suggestion of something else other than a benzo, to take prior to the dental work being performed ? I have been benzo free for 4 years now except for these dental procedures.
I am a 75-year-old lady in my 11th year off benzos, not done yet, but slowly getting there. I am a musical person, and singing my mantras has helped me IMMENSELY!! I wrote several “musical mantras” which I share in the link below. (I believe in God, so there are two references to Him. I apologize for the small print – this was made by a relative.) These songs helped me stay focused and pass the time while out walking, working in the garden or around the house. Feel free to share this with other sufferers. Hang in there – time wins!! :):)
https://mega.nz/file/MY5FDYpI#gCgZJ8x45dhmwWOxASHUqvKmW_7ED_jVEthLhJTloZ4
Hi Jenn, thanks for a bit of a ramble and encouragement.
I still have a long road to go with tapering and try to only live one day at a time. I had a reprieve as I’ve started taking magnesium and the tremors stopped and I felt I could face life Again without feeling totally overwhelmed and wondering how I was going to do each day. It’s such a fine balance for me because I felt good and did too much and so the flare-ups come much more easily because of down regulation of Gabba and so without sleep and extra pain today is incredibly challenging again but I am doing this for as long as it takes and I will continue to thank my body for finding its healing and balance of the neurotransmitters in my brain. Today the sun is shining After Days of rain and autumn is here and the days are balmy and the sun is softer as it moves North.
I’m going to investigate a few more herbal supplements that will help with the down regulation of the glutamate and take them in a homeopathic way because my nervous system is so sensitive.
I love how you made the garden in your recovery as my garden is my solace and it’s a beautiful space for healing and I even have a blue tongue lizard that I feed every day and five big fat goldfish with water lilies and lots of native flowers that bring the native bees. Where would we be without our gardens. Thank you again for your blog and encouragement and love and constant support.
Robbie ♥️
You are so welcome! Enjoy the coming of the quiet months in your hemisphere of the world! I love the cooler days and the slower pace. Taking care of the wildlife and plants is incredible good/healing for our brain and nervous system. I’m glad you choose to do that. Sending you lots of love from California!
Thank you for sharing your thoughts and mantras! Sending you lots of love.
That’s a great question. I would try to avoid a benzo and use something else if I felt I couldn’t face dental work without something to calm me. I’d speak to my doctor and ask what they think
would be a good alternative to a benzo. Some people have used an antihistamine for anxiety-producing situations. I hope you can find something that helps. Please don’t avoid seeing a dentist!! I am still going through major dental work/restoration because of my lack of dental care during benzo withdrawal. 🙁
I am sorry you are suffering so much. I remember those minute-by minute days of feelings as if I could barely hold on and get through them. They do go away. I can’t say that I thought my intrusive thoughts or fear/panic/terror were laughable, but I did recognize as I healed, that they were based solely on a hyper-excited nervous system and not based on reality. I had a lot of compassion for myself, for what I had endured, and that tenderness I felt for myself was healing. We experience something called post-traumatic wisdom when we recover. We see we have grown for having gone through benzo withdrawal. Our transformation into a better version of ourselves is incredibly satisfying! You will get here. Keep healing. Sending you lots of love.
I am sorry to hear you are in a setback. They can happen. Thankfully, they fade away. Remember that you have felt better, that your nervous system has functioned better, and trust that it will bounce back. Always see a doctor to rule out anything else if need be, but trust that your brain knows what it needs to do. Sending you lots of love.
I am sorry to hear you are symptomatic again. This can happen, especially after experiencing significant stressors. Use all of your coping skills to navigate this rough patch, knowing that your nervous system will recover and settle down. As I tell everyone, see a doctor to rule out any other cause of your symptoms if need be. I am not an MD and can’t diagnose or treat anyone. We are here for you! Sending you lots of love.
I’m afraid! I’m not sure I can do this! Stuck at .25mg and having many waves! The thought of spending years of misery after a taper at my age makes me wonder if it’s worth it!
I am so sorry you are so frightened. I can understand your feelings. But you can do this! Millions of us have. We recover. We go on with healthy, happy lives. Feel free to join my support group for more encouragement and deep dives into the things that help us recover and be happy.
Hi Jenn,
I was tapering… feeling good about myself, but then had family come to stay two weeks, following week my daughter ( who os hyperactive, 30 yrs old). Two days after that my husband decided we had to go to Guatemala for 9 days… l came undone from the stimulation, visual, auditive. It was all too much!! I went back to more Xanax! Couldn’t deal with anything. My husband thinks it’s all psychological. I sent him your article on traveling and benzos. He wouldn’t read it.
I feel like l can’t get through this by myself, especially when Xanax is the worst. Two years ago l got myself off Clonapin, silently and on my own. But Xanax is another story.
I feel so alone.
Thanks so much for this, Jen! I am almost 90 days out from my last dose of Klonopin after being on my prescribed 2mgs daily for over 10 years. I feel right now like my body is on fire, tingling, itching, crawling. That doesn’t help my insomnia. Being tired makes everything else so much worse. What gets me through the day is the hope that my brain will someday get better and this will all be behind me. Thank you for your words, the serve as a huge source of encouragement for us all.
Congratulations on getting benzo free! I know how challenging that journey can be. Sensations of burning, tingling, itching, crawling feelings, etc., are very common benzo withdrawal symptoms. They are evidence of a hyper-excited nervous system. (I always suggest that people get a good checkup to rule out any other causes of symptoms, but 99.99% of the time, doctors cannot find anything, so then it is safe to assume the symptoms are benzo-related). Keep healing! We are here for you.
I am so sorry to hear that the visit was so stressful. We are here for you! Please join my live coaching/support group or book a coaching session with me if you need more support. I am happy to help. I know how frustrating it is when family or friends do not understand what we are going through.