Not much ruffles my feathers these days. I’ve survived a cold-turkey withdrawal from the clonazepam I took as prescribed. I can’t imagine a more horrific experience to live through. The mental, physical, and emotional benzo withdrawal symptoms are more diabolical than anything Stephen King could dream up. They are so horrifying and bizarre that those of us who have experienced them understand the statement “truth is stranger than fiction.” Not everyone who takes a benzo will experience withdrawal, that’s true. (There isn’t any research that proves conclusively what DNA differences allows one brain to go unscathed while another is decimated.) Maybe that’s why some people, doctors included, have a hard time believing those of us who do suffer. It’s too easy to dismiss our benzo withdrawal symptoms as pre-existing conditions, a new mental or physical illness, or that we’re making it up; it’s “all in our head.” Recently I replied to a friend’s Facebook post about benzo withdrawal and a stranger answered my comment and claimed that my information about withdrawal was an opinion (not a fact, not real) and I lost my shit—feathers ruffled big time.
I ruminated over the stranger’s comment; angry and sad that in this day in age, benzo withdrawal is still not recognized as an iatrogenic illness which can be life altering and even life-endangering. I wanted to reply to the stranger how I went from having a growing career as a leading expert in my field, on television and radio, interviewed by top-tier media, with books to my name and high paying coaching clients to bedridden, unable to take care of the most basic of human needs. I had to cut off my hair because I was too weak to stand in the shower to wash it, and in too much pain to hold a hairdryer to style it. I went days without brushing my teeth because it hurt my arm and my fingers to hold a toothbrush. And, there were days I went without eating because I was too weak to walk to my kitchen. I’ll never forget the early morning I called my son to come over to help me to the bathroom. He scooped my frail bones out of the bed and carried me to the toilet where he graciously held me and turned his head while I relieved myself. Then there were the long and harsh years of recovery that I lived through. I wanted to tell the stranger who wrote that benzo withdrawal is just an opinion, that her words rob those of us who have been harmed by a benzodiazepine of our most basic human dignity. I was angry with her words because they dismissed the millions of people who have lived through the horror of benzo withdrawal and had to rebuild their lives from the ashes. Her words disrespected those whose lives were lost to benzo withdrawal.
I thought about the stranger’s comment for a few days and decided not to reply to it. What was the point in getting locked in a heated argument on social media? I knew I had little chance to change her mind. No, arguing with people who don’t want to believe that benzo withdrawal is a real phenomenon is a waste of time. But the persistent sharing of facts about benzo withdrawal is not a waste of time. Sharing hope with others who are suffering in benzo withdrawal is not a waste of time either. So, I continue to do both. I blog about benzo withdrawal in hopes of educating those who want to be educated, and I share hope, the knowledge, that we do recover, in time.
Withdrawal from a benzodiazepine is a fact. Millions of people experience it. Just because some people can take a benzo and not experience withdrawal doesn’t mean that those of us who do experience withdrawal are “making it up.” Not everyone who smokes cigarettes will get cancer, but we know that those who do, aren’t “making it up.” And, we know that the medical profession used to advertise cigarettes! One day, hopefully in the not too distant future, the medical profession will come to understand that their endorsement of benzodiazepines by way of prescribing them, is on par with their wrong and disastrous endorsement of nicotine. #benzowithdrawalisreal #benzowithdrawalisnotanopinion #benzowithdrawalhelp.com.
I am struggling with this right now. I had a horrific reaction to an SSRI and severe withdrawal during a bout of post partum depression. I was psychotic and severely exhausted by the time that drug left my body, yet doctors blamed me, saying I had a mysterious anxiety disorder or that it was PTSD. I kept trying other drugs, each one adding to the biological, chemical damage in my brain. I felt crazy because nobody could see me and what was really happening. I was saved by an amazing doctor who stabalized me on a low dose of klonopin and offered therapy. This helped me sleep atleast a little bit but the klonopin undermined my healing. I approached the withdrawal much slower, but even with my beloved doctor, I felt she did not understand my need to come off klonopin with a liquid taper. No matter how slow and subtle I went, I still struggled with withdrawal and that fear of invalidation. It has been 4 years now and if I could write a book it would be, “I’m not really this crazy. It’s the drugs.” I hate the fact that the people who do not suffer, who are ok with meds and 50 percent taper plans are the norm and if you do not fit in with that then it is your inherent craziness. There is an injustice to that.
He Jenn, thank you so much for a wonderful post. Well done to you for not rising to negative comments, you have worked too hard and been through too much to let a very lucky person, who obviously never experienced this barbaric journey, get under your skin. When I stopped taking the Benzo I had taken for 15 years after breaking my back, I thought I had developed and incurable neurological disease, as I was so, so poorly. The doctors as with many thousands out there, did not know what was wrong with me. I thank God every day that I came across one of your old Blogs, and the symptoms were so similar. I asked my Doctor if stopping the tablet could cause what I am experiencing, nerve pain ect and he said yes, “people have a hard time stopping these”. I thought to myself, hard time, I feel like when you prescribed me these you should have just signed my death certificate.
For the people that do not believe in Benzo withdrawal, I say to you, you have been blessed never to have experienced this horrific torture, think yourself the luckiest person alive!
Dr Jenn, thank you for keeping me positive and moving forward and I will get through this.
I know you understand and everyone who posts comments here understands Benzo withdrawal and recovery, and thanks to you more and more people will become aware.
Love and hugs across the Pond
Jackie
Edinburgh
Yes, thank you for all of your hard work and strength- my daughter is still suffering from benzo withdrawal and it’s been over a year . (She only took a benzo for 21/2 months)
This shit should be illegal ! And it’s just nuts how nobody believes withdrawal even exists. You’re partially why, Jennifer that my daughter is alive . We would read what you would write over and over again – so, thank you from the bottom of my heart for all of your dedication and hard work . It really does help !
Georgie Parker
Oregon:)
It’s a total travesty that you have to go through this to understand and believe. I know some people won’t like me saying this, but it’s not the same for cancer. I’ve actually heard people who have been through both actually say the benzo WD was way worse and sometimes I have begged for some other serious illness just to be understood, instead of having to battle through my life as ‘normally’ as possible, just to keep a roof over mine and my kids heads. We can’t take sick leave for this and if we go to a doctor, we have to lie because they would dismiss us, try to convince us we are unstable permanently and most likely want to drug us to high heaven or have us committed. I have a general dislike for the medical community because of what has happened to me, whereas others tend to see doctors as ‘gods’. I remember telling my GP when I came off a small dose off valium taken as prescribed, in fact less than prescribed, that I was having strange symptoms and when I told her several months later I was still having issues, I remember her clearly exclaiming STILL???? I felt like saying, actually no, I thought it would be funny to tell you this, even though I don’t experience anything funny right now as I’m currently trying to keep a job, bring up my kids and survive because I’m in hell. Sorry for the rant, I’m having a bad day STILL!!! And yes it’s 3 years since I tapered.
Yes thank you Jenn. If only the naysayers could experience benzo withdrawal for just one day they would be calling us heroes! The first year of my ct withdrawal was hell on earth and I am still not completely well at 8 years off! Even my very sceptical md at the time, came to understand how dangerous the benzos were and said she would never prescribe them again.
on another note, I posted earlier on your blog that I had a setback at seven years off after 5 years of relative wellness. Frustrated at how things were going, I went for food testing with my naturopath and it turned out that beans of all kinds as well as all grains (not just gluten), and some of the nightshades, especially tomatoes, are inflammatory for me. I had given up dairy and gluten years ago due to allergies, but I had not realized that I was sensitive to lectins.
A couple of weeks after I eliminated all the foods that were inflammatory for me personally, I felt much better. I still have to be careful with sweet foods, caffeine and alcohol, but otherwise I feel great. All the benzo style ‘anxiety’, strange inner vibrations and burning skin that I was battling again, faded away. Inflammatory foods can really affect our brains, clog up our sinuses and generally create disease over time.
I had thought that beans and legumes were some of the healthiest foods, and they are for some people, but not if you have lectin intolerance.
I hope this might help some people in protracted withdrawal. It seems that a paleo style diet with good quality grass fed meats and free range eggs with lots of vegetables and some fruit is a good way to encourage our brains to heal. Dr David Perlmutter (ground breaking neurologist) supports this diet in his book (grain brain).
Thanks so much again for your brilliant blog Jenn. I do hope that you are fully recovered now and enjoying a blessed life. I really don’t know how you did it living alone, but you did and you helped thousands of us in the process.
Annie
It blows my mind that even some medical professionals aren’t aware of the dangers of benzo withdrawal. Its one of the only substances (despite DT seizures from alcohol) that in extreme cases can actually result in death. No one should EVER undergo a medically unsupervised benzo withdrawal, it is incredibly dangerous. I’ve overcome a heroin addiction in the past and my benzo withdrawal was by far WORSE than my opiod withdrawal. it can last for months and ive seen cases where people never fully recover. The problem with addiction medicine is it’s a relatively new field that we still don’t fully understand! Which results in a multitude of opinions and treatment processes, most of which are outdated. This, coupled with a medical professional’s lack of personal experience, sadly sometimes results in the patient having the greater knowledge than those treating them. It can be incredibly frustrating having your life experience completely over ridden by a certificate on a wall. Especially when its regarding someones quality of life!
It’s a total travesty that you have to go through this to understand and believe. I know some people won’t like me saying this, but it’s not the same for cancer. I’ve actually heard people who have been through both actually say the benzo WD was way worse and sometimes I have begged for some other serious illness just to be understood, instead of having to battle through my life as ‘normally’ as possible, just to keep a roof over mine and my kids heads. We can’t take sick leave for this and if we go to a doctor, we have to lie because they would dismiss us, try to convince us we are unstable permanently and most likely want to drug us to high heaven or have us committed. I have a general dislike for the medical community because of what has happened to me, whereas others tend to see doctors as ‘gods’. I remember telling my GP when I came off a small dose off valium taken as prescribed, in fact less than prescribed, that I was having strange symptoms and when I told her several months later I was still having issues, I remember her clearly exclaiming STILL???? I felt like saying, actually no, I thought it would be funny to tell you this, even though I don’t experience anything funny right now as I’m currently trying to keep a job, bring up my kids and survive because I’m in hell. Sorry for the rant, I’m having a bad day STILL!!! And yes it’s 3 years since I tapered.