If we had been diagnosed with cancer, our family and friends would know that we are sick.They’d make us casseroles, take us to our chemo appointments, and call us to see how we are doing. After all, cancer is a serious matter, They would be concerned. But family and friends have very little knowledge about benzo withdrawal so they don’t know just how serious it is. This is what we wish they knew about benzo withdrawal.
We trusted our doctors and took a pill, as prescribed, and it damaged one of the two main “circuit boards” that regulate our brains. We have damaged GABA receptors, which means our bodies and minds don’t have the ability to slow/calm down. We suffer from chemical brain damage that can take a long time (sometimes years) to heal. Many of us have severe physical symptoms: painful joints, bones, muscles, teeth, eyes, mouth, etc. Our skin burns. It feels as if we have bugs crawling under our skin, or that bees are stinging us. Our muscles twitch and spasm. Our legs are weak and our balance is off; walking is difficult. But some of us do walk, and walk, and walk, as we are suffering from akathisia, a movement disorder that causes an inner restlessness and a compelling need to be in constant motion. We have painful and frightening pressure in our heads, making it feel as if the world is sloshing around us. Many of us are bedridden for months at a time, unable to take care of the most basic of human needs. We can’t think properly, and our memory is impaired. There are countless other physical symptoms that we may have as this is not an exhaustive list. What we want our friends and family to know is that we are sick and in pain. It’s hard to manage our lives. Many of us are unable to work or to function in our roles and duties as a parent. On top of being physically sick, we have mental symptoms as well.
Without a functioning GABA system to calm the fight/flight/freeze response of our brains, we live in a state of fear, anxiety, paranoia, or terror. We may have depersonalization or derealization. Frequent panic attacks are common. In benzo withdrawal, we lose the ability to feel positive emotions. Love, happiness, and joy are not within our reach. We slog through our days feeling a zombie-like doom and gloom. Intrusive and looping thoughts are common. We have very little control over our minds. Visual, auditory, and olfactory hallucinations are not uncommon. We wish that our friends and family understood how frightening it is to lose the ability to think rationally and to no longer feel as if you are the same person you were before benzo withdrawal. It is hard to live in the altered reality that benzo withdrawal can create.
We want friends and family to know that we are scared and oftentimes feeling hopeless. We need a great deal of reassurance. When we get scared that we will never get well; that we will never be ourselves again, we want you to remind us that we are healing. We know that we tax your patience, and we feel bad about being so needy. But we hope that you can hang in there with us as we do the hard work of holding on and surviving. We want you to take care of yourself so that you have the energy to take care of us too when we need your help. Please don’t burn out! It’s okay to take time away from us to refresh and recharge.
We know that the only cure for benzo withdrawal is time, so your suggestions to “Go see a doctor” or “Get back on your meds,” or “Up your dose,” doesn’t help us. See, what you don’t know is that the medical community understands very little about the damage these drugs cause. We’ve learned from thousands of others who have lived through benzo withdrawal. There are no meds for withdrawal, nor should anyone be on a benzo for more than a few days. Please trust that we have educated ourselves about the healing process from benzos.
We want our friends and family to know that benzo withdrawal will come to an end one day, (even if we don’t believe that ourselves). Our brains and our bodies will heal. We will start new chapters in our lives. We want everyone that we love to go the distance with us and to celebrate the dawning of the new day when we are recovered. Until then, we just need you to listen to us, to be there for us. We don’t need you to try to fix us; we know that you can’t. Just love us, exactly as we are, and where we are on our journey. We thank you and love you for being there for us while we battle an invisible, and medically ignored illness of great magnitude.
There is hardly anything of our lives that is recognizable in benzo withdrawal. We are doing the best we can with what we have to work with. We can’t magically think “happy thoughts,” or “snap out of it.” We have to wait for our brains to heal. Please, wait with us.
Jennifer, thank you for this wonderful post! It is so hard for me to articulate my thoughts and feelings to my wife. This post captures so much of those thoughts and feelings that I would like to share. I plan to ask my wife to read the post and tell her that it is what I want her to know. God bless you and thank you for your help and support! Dan
I honestly cannot believe I’ve come here and again the subject is so relevant. Just now I feel a burden, that everyone is fed up with my illness. My daughter who is usually my supporter (she’s 20) just this morning rolled her eyes an cut off my latest ridiculous, needing reassurance question, before I could finish and sent me over the edge and broke my heart. I love her dearly and worry this will ruin our relationship. I’m not allowed to speak of it to my sister and others just look at me like I’m the crazy one. I do however completely understand how difficult it is for loved ones, particularly when this goes on for a long time (I’m approaching 3 years, which is longer than I took valium, plus a low dose). The problem I feel is that if we were diagnosed by a doctor this would not happen. Instead they think a doctor is who we should see to be misdiagnosed. Doctors in my family unfortunately are viewed like Gods. Thank you for writing such inspiring and comforting articles. We too also need reminding what we are going through.
Jennifer, thank you, thank you, thank you for such a concise explanation to loved ones and family concerning what we are going through. Now we can send them the vital info easily and not try to piecemeal other links/websites trying to explain. As always you are awesome and for me, an angel sent directly (passing thru Benzo recovery) from heaven.
May God bless you and yours, Rick
Jennifer,
Great post! What is the second main “circuit board”? Is it glutamate?
Thank you for this post.
This is timely for me too as I called my sister hysterical the other day and she told me ” I can’t listen to this” ” I am allowed to set boundaries”. She argued with me which of course I understand if I was normal and functioning. She is an aggressive person and that’s her nature. However now I just needed soothing so badly. Needed reassurance. Came to grips with the truth of this. My life, my office, my passion, my parenting all of it. The gravity of it all. and the lack of acknowledgement. Thank you for mentioning all of the sx I have too including akathisia. I just need people to come visit even for an hour. A day. five minutes. It’s painful though too to see people ;living their life.
I am so scared this is it. Thank you for your hope.
Sharing with my family, words when I can not find my own.
Thank You Jennifer.
thank you, thank you, thank you. my thirteen-year-old son calvin was on klonopin for three years and has been on onfi for at least seven. he has been weaning from it for three years and we have at least another six to nine months before he is completely off of it. he has medically refractory epilepsy and the benzos helped for a while until he habituated time and again, bringing him to a huge dose for his age and size. he is non-verbal, but still i know he suffers the symptoms you’ve written above. it kills me wondering if he will ever be rid of the restlessness you mention. the only solace is in know he is not alone and that, perhaps, he will heal.
This is so true! You’ve described the damage from the lack of GABA so well here! It is frustrating, to say the least, that people don’t realize this is happening and then they run to the doctor with all these symptoms and get diagnosed with something else!…… then they get put on another medication, and then more side effects, and it never ends!! After three years being off benzos, I still have many of these symptoms, but I can tell my body is trying to heal itself because my symptoms are improving. Thanks so much for your work and support, Jennifer!
Jennifer, I can’t even write anything right now. I THINK something wonderful is happening. It feels different from my past partial windows. I’m just sitting here enjoying the calmness of my brain and some WARM feelings washing over me! For 3 days now.(32 months and 2 weeks off today.) If it’s a window I hope it never closes. Just wanted to let you know. Sorry I’m off topic.
YAHOOOOO!! Thanks for letting us know. Fingers crossed for you.
I pray that he will heal completely. I am so sorry for his suffering.
yes! The gas pedal.
Hi Jennifer,
GREAT post !!! I am sharing it on my family only Facebook. You summed it up so amazingly well… words difficult for me to pen within my Benzo Brain Fog – impairment. Thank you for your continued insights and guidance. 😇
With Gratitude, Jerry
Jennifer,
Me again 🤣I am saving up $$$ to have a 1 on 1 coaching session with you ! Sooo much to share, ask about, delve into… Be in touch soon.
With Gratitude, Jerry
The 5 point protocol as introduced by the National Acupuncture Detox Association has proven to me to be successful. I was in a natural disaster and NADA provided acupuncture for insomnia and PTSD symptoms. Unbeknownst to me, it was also a detox tool. I detoxed from both clonazepam and buprenorphine/naloxone without knowing anything about it’s detox properties.
Jennifer, wonderfully said. I printed it out and will shre it with some key people in my life. Thanks so very much.♥♥ I really feel like I might be on the last leg of this journey.
Rob Gronowski on March 20, 2017 at 4:09 am
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Jennifer, this maybe one of the hardest and most important parts of going thru this as unless you have gone thru it or are going thru it there is such lack of understanding ! Thank You and God Bless ~Rob
I just sent this to my nephew and his wife. His father has not talked to me since this mess started. I hope they will share it with him. Thank you so much for writing this.