In October 2016, I wrote an open letter detailing my withdrawal and the dangers of benzodiazepine withdrawal syndrome.
Many have asked how I am doing since that time. I’m going to be completely open and honest in this update. Things have been extremely rough. I have tapered down to 6 mg of Valium (from 8.5 mg) since October 2016. I was delayed in my taper by a second cancer-related surgery, but I am also extremely sensitive to cuts in my Valium dose and need to remain semi-functional for my young daughter. My taper progress is slow and painful. I suffer a multitude of physical and mental symptoms on a daily basis. Many days I wish for death because I have become so ill. As I’ve gotten lower, the taper has gotten harder.
I have developed new and worsening symptoms. I often awake early in the morning with my heart pounding and quivering all over with pure chemical terror. Sometimes it’s so bad I scream and plead for God to help me, but there is only silence. Some days I am too weak to do much besides lie in bed. I have had urges that scare me. On one of my lowest days, I took a pair of scissors to my hair and chopped it off because of an uncontrollable urge to do so. I have yet to go to the hairdresser to get it fixed.
I cycle between being nauseous with little appetite and needing to eat frequently due to panic-inducing hypoglycemic episodes. I am gaining weight and none of my clothes fit, but I’m too tired to buy new ones. My cognitive function is poor. Trying to read a menu at a restaurant, find a lost object, or prepare breakfast for my daughter is enough to send me into a meltdown. I had none of these symptoms prior to starting and then tapering a benzodiazepine.
While I am going through this battle, my family is being torn apart. My young daughter has lost her mother, and my husband has grown weary of caring for me. I am watching life slowly pass me by, and there’s nothing I can do about it. I cannot begin to describe the agony of watching my beautiful daughter grow up while I can only participate in her life in a very limited fashion.
This is honestly the most horrifying process that I can imagine anyone having to endure. I have seen many on the benzo support forums saying they wished their doctor were put on these pills in order to experience the agony of withdrawal, in the hopes they may believe their patients and take action. This is an understandable emotion, but I would never wish this on anyone. Just to be perfectly clear, I never prescribed benzodiazepines in my practice, so I have never inflicted this nightmare on anyone. However, since experiencing this medical disaster, I have decided to take up the cause of benzo awareness and advocacy. I have become a director at Benzodiazepine Information Coalition, where we are working to increase awareness of the dangers of the drug. We have several projects we are working on. Currently, I am working on a project to help the benzo-injured file FDA Medwatch reports so that we can re-petition the FDA for changes in benzodiazepine literature and recommended physician prescribing and cessation practices. Every benzo injured person needs to file this report, as we need a database of information in order to begin to fix the problem. For details, please see https://www.benzoinfo.com/fda
I may be very sick, but I’m not going to let this problem go without notice. Please stand up and fight with me.
Are you doing this willingly? Because doctors here are trying to enforce rapid tapers or just cutting people off. I have experienced the hell it was to come down from 5 mg to 4mg- it is hell. Are you ok?
Why would you be on a benzo taper while in the middle of fighting cancer? I have a similar situation and the stress of doing that cannot be good for you? I don’t get it. I have been trying to get off valium and am down to 4 mg. I just found out I have a blood disorder that may be cancer and I don’t think that I could do it.
Recognizing the problem and getting the word out is too late for those of us who followed our doctors prescription exactly for years until the medication stopped working and we have all the symptoms that Dr. Huff mentions and they have not abated for years. What happens to people like us, who have not slept for over 8 years???
All the recognition and commiserating has done nothing – the anonymity, the divides within families, big pharma and medicines deliberate ongoing denial “business strategy” all of this is maiming and killing dare I say millions globally over the last 3/4 decades. There are no faces and names to this epidemic – they are discounting this epidemic as crazy drug addict attention seeking “victims”.
We need to post names phone numbers picures of victims. Family members need to believe
Doctors the ethical ones need to start caring for patients and fighting for what’s right . PLEASE ATEMPT TO STOP THE CARNAGE OF LIVES
WE MUST UNITE OR THER WILL BE MILLONS MORE VICTIMS TO COME.
WE NEED FAMILY MEMEBERS OF SUFFERERS WHO ARENT ILL TO STAND UP ACROSS ALL RACES AND SOCIAL DVIDING LINES AND UNITE FOR JUSTICE FOR VICTIMS. STOP SUFFERING IN SILENCE – DOCTORS QUIT BEING COMPLICITOUS! FIRST DO NO HARM – YOU CAN HELP UNDO THE HARM PERPETRATED LARGELY BY THE DRUG COMPANIES
Dear John
EXACTLY RIGHT!!!!
Would like more info
I am two years benzo free. After trying to taper with a medical professional (?) who decreased and then increased my dose I stopped cold turkey. I was prescribed Xanax for 32 years. I’ve been having a difficult time lately, which is disheartening because I have made good progress. Does this happen frequently?
Dr. Huff,
How are you doing now? I am so scared because I believed my doctors for years. They started me on Xanax in 1997. Then in 2013, they cold turkey cut my Xanax and started me on 4mg Klonopin. Plus I have been tried out on about 25 different antidepressants and a few antipsychotics. They never helped. I decided around March of 2017 to cut my Klonopin from 4mg to 3mg, my lexapro from 20mg to 10mg, and Vistaril from 75mg to 50mg. Now, a year later I’m just severely depressed-suicidal thoughts at times, extreme fatigue and exhaustion. It’s difficult to do anything. I’m now tapering at a slower rate but cannot find a doctor who will help. I hear these horror stories and I am scared. I need to be able to function. My son has been diagnosed with schizophrenia and attempted suicide and other tragic events. My family has fallen apart between me and my son. My other three children have little to do with us. My oldest daughter is a nurse and says I’m a drug addict and is very cruel to me. My heart is broken in millions of pieces. I’m afraid of getting panic attacks again. That is why they started me on Xanax. I’m afraid I will not make it. Did you get off? Are you well?
Any response to Martha’s post from 4/9? Martha are you ok? I’m terrified as well. Similar story. Suicidal.
I can certainly understand what she is going through, I myself went through hell and back getting off benzodiazepines and opioids mixed together at the same time for 43+ years, my Dr said I wouldn’t have any problems yeah right, I would be very interested in telling my story because frankly from what I’ve been told mixing that combo along with other controlled drug’s on top of what I was taking I’m lucky to be alive, if you want to hear more please hit me up thanks and be well you can do it.
Glad to hear a member of the medical community is recognizing the problems theses meds have caused.