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EXPERIENCES IN BENZODIAZEPINE WITHDRAWAL SYNDROME
5 months after I cold turkeyed off, the benzos, that itch at the back of my head spread out into a crack. I started experience stabbing neuropathic pain in my chest and severe insomnia. The incredible pain wouldn’t go away and death seemed like the only way to end the torment. That was when I knew I needed to get back into the psychiatric ward to fix this. The first hospital I went to was awful, and left me unable to fall asleep for a further 3 days. I sustain a seizure and my face when numb together with my groin that also left me with frightening air hunger and difficulty peeing. When I got out, things became even more bizarre. I alternated between several states - one of depression, one of anxiety with stabbing pains and one of derealisation/depersonalisation. I was then struck with an episode of confusion where my thoughts spiralled non-stop. Thoughts of suicide completely overwhelmed me.
Finally, I went to the hospital again in what was another round of hell. Dosed with anti-depressants and anti-psychotics, I suffered horrific torture in the form of akathisia and Parkinsonism. I though I would be in that state forever, unable to stay still and unable to move my hands. Fortunately, those effects were reversible. Somehow or another, whether due to the treatment of in spite of the treatment, the mental conditions cleared up. The stabbing pain and numbness in the groin gradually diminished even after I had been discharged.
It’s been two months since being discharged, things are much better. I don’t feel anymore pain. I’m left with occasional cortisol surges, blaring tinnitus, sound sensitivity, PSSD-like symptoms and an elevated stress response, but more or less still functional.
It was just two weeks of benzo, and I suffered 6 months of hell. I learnt the hard way the kind of damage that benzodiazepine can wrought on the nervous system.
I can relate to all of the stories so horrifique. I was on clonazepam for almost 20 years 1.5 mg when I was cut off cold Turkey for almost 2 weeks. During that time I couldn't even stand up. So the doctor switched me over to value MSA substitute and a slow taper. However the taper is not going very well I am currently down to 3.5 mg in the morning and 10 mg at night per the Ashton manual.
I am not following the taper exactly as in her plan and only tapering by a have of a milligram every week because the side effects are so terrible. On top of that my body is not adjusting well to volume at all I am constant diarrhea all day long and there is no other then so they can switch me to that will work. They tried putting me back on the clonazepam and I had such a terrible reaction they had to take me off of it. I feel my life is over and at this point every day I just lay on the floor I have lost everything in my life my job and was a my home my family I don't feel I can go I'll anymore.
Engine reading it says that the taper only gets harder as the dose goes down I live alone and don't have much family and I'm very scared most of the time and just lay here and shake any advice please help me
WE MUST DEMAND INFORMED WRITTEN CONSENT FOR ALL RX MEDICATIONS NOW!
A two week withdraw from Effexor in 2004 turned the decline from simply taking this drug long term, into a full blown crisis cited as "worsening illness relapse from being unmedicated" from which I have had 15 years where I look back now as best I can, and now believe I never fully recovered from the shock to my brain and nervous system. By the time I really started to wonder if taking Effexor was a rrot cause of my worsening mental and physical health it was Dec 2015 - I finally concluded Effexor had long been a problem and took three months to go off of - it didn't matter, I wouldn't have mattered had I taken twelve months to taper - my system had already been shocked going of on these type of drugs multiple times much severe damage had already occurred but even then, I filed to realize my continually use of Ativan in small doses of .5 to one milligram 1-3 times a day to cope with the increasing adverse effect of Effexor the Ativan itself was also destroying my health, and stopping it has made agony a full blown torture.
ONE OF THESE DRUGS ATHE LOWEST DOSE FOR THE SHORTEST PERIOD IS DANGEROUS ENOUGH - BUT POLICY PHARMACY OF ANY DRUG AT ANY AGE SHOULD BE AVOIDED - THE OLDER YOU ARE THE MORE THIS IS THE NORM AND THE MORE DANGEROUS IT IS
Doctors/phychs/counselors - the majority know little about these drugs - because they don't want to know! more often than not I believe they eventually lead to significant worsening of the orginal condition(s) and the creation of more severe conditions the person never had. In my case I have been suffering horrific akathisia that I have been aware of for two years and I believe to some degree for a lot longer than that. INTERNAL AKATHISEA is absolute HORROR and many have it and mistake it for severe ongoing anxiety or "anxiety syndrome" or diagnosis of the day - it is usually misdiagnosed and made worse by "professionals" citing worsening condition - and need for more meds - which is thee worst thing - they can worsen this and or kill you very easily.
Count yourself lucky if you heal from AKATHISIEA upon cessation of the offending drug(s) as safely/slowly as needed or if suffering an acute onset from a new drug which they at least sometimes recognize, but dose adjustment or withdrawal AKATHISIA is in my view deliberately not recognized and or misdiagnosed far more than acute onset at the start of a new drug, GOD HAVE MERCY ON THOSE SUFFERING UPON RECOGNIZING WHAT LIES AND POISONING WE HAVE BEEN SUBJECTED TO ONLY TO FACE THE HORRORS AND DENIALS OF PROTRACTED AND OR CHRONIC EFFECTS OF THESE DRUGS, WHICH HAVE AND CONTINUE TO DESTROY SO MANY LIVES AND FAMILIES!
DONT BE SILENT - TELL EVERYONE - YES I KNOW HOW FEW BELIVE YOU, BUT WE MUST TELL THESE TRUTHS TO PREVENT MORE VICTIMS AND TO HAVE JUSTICE FOR THOSE WHO HAVE BEEN HARMED!
Three failed tapers, kindled third taper after up dosing because I had up dosed many times. Final taper. Crossed to Valium 5mg 2 1/2 months ago. Now micro tapering just under 2mg.
I have been as positive as I know how to be. I think that I have come along way considering what I have endured. I have suffered delusion, psychosis, terror, irrational fear, fear that I am going insane, the feeling like I'm being burned alive from the inside out hugging myself in agony, crying out loud help me in the middle of the night, unable to speak because of the pain, unable to form sentences, fear of being committed, agoraphobia, feeling as though I am being eaten alive by fire ants stinging me in my mouth, nose, ear canal, tounge, teeth, esophagus, lungs, eyes, my feet like being boiled in a pan of water, my skin on my whole body feeling like there're bugs and worms crawling on top of and underneith it, six days without sleep, severe lack of sleep, akathesia where it was impossible to sit or lay down for more than minute for five months, tenitis that sounds like a jet air plane so defening you can't think, finger and toe nails burning, my teeth and gums burning, extreme anxiety, laying on the floor for 6 months because it's less painful, afraid to go to bed because I knew that I would wake up feeling like I'm being burned alive, horrible nightmares, afraid to eat food, afraid to take meds, afraid of my wife, forgetting who I am , thinking that I was being held hostage, writhing in pain on the floor unable to speak as the family watched and could do nothing, afraid of TV, afraid of the computer, afraid to drive, afraid to be seen, crapping on myself, feeling like a hot iron was shoved up my butt, losing my income, not knowing if I would ever be normal again, prayed to die, question my salvation and God's love, all day and night 24/7 for almost seven months. The list goes on...
I am doing much better now, still a little nerve pain, tenitis. I am under 2mg Valium, I will soon be off forever.
I'm about 90% healed now.
I thought that I was never going to be well again! I was wrong, you will get better!
Praise God for helping me cope with and heal from this horror story!
It seemed like a good experience, so when i had another experience of extreme anxiety around 9 months later, I went to another doctor, who prescribed me Librium (related, not available now), on which I was hooked, off and on, for nearly 4 years, until I went off it on my own willpower, knowing nothing about its dangerous side effects (no, not even at 26 1/2, 4 years from my first Benzo), except that the withdrawals were terrible and frightened me; and in the U.S., you needed to pay big money (for a student, which I was) to see a psychiatrist and get a prescription.
Since then, I've had medication-free periods when I was most creative (I published a novel that was extremely well received), but the last chemical-free episode ended as my marriage was drawing to its end, I couldn't sleep, and my doctor-wife suggested many of her patients were managing quite fine on Valium, that I should just resume my nightly dose. From then on, for 17 years, I have not been able to get off of it, but I have written a book titled "Benzo Land: How Doctors and Drug Companies Enslave Us" (at Amazon, Google Play, and Smashwords), which shares my story and my passion to be chemical-free.
My problems with benzodiazepines began when I traveled through Asia in the 70's. I couldn't sleep. I went to see a doctor in Bali and he told me to go to what seemed like a bulk drug pharmacy where I could buy as many Mogadons as I wanted, without prescription. I was told that they were harmless. This was the beginning of a long dependency on these drugs because tragically they were not nearly as easy to get off!
I began to experience rebound insomnia but when I tried to stop taking the pills the symptoms got worse.
Over the years I went to see many different doctors to get help and advice. The advice on how to stop taking them was at best incorrect but often dangerous. Twice, when I fell pregnant I was advised to stop taking the them (cold-turkey) and this can cause seizures. Other times I was told to break the tablets in half and reduce by a quarter every few days. Benzodiazepines need to be tapered slowly for safe tapering. I was also offered a variety of benzodiazepines some of which I tried - the most dangerous one being Halcion which has a half life of somewhere between 2 and 5.5 hours which means the drug leaves the blood stream very quickly. I soon went into tolerance withdrawal and the only way that I can describe it was hell on earth. The only way that I survived was by focusing on my breathing - that was all that I could do. I went from doctor to doctor for help but the advice I got was always completely inappropriate - learn to relax, go to yoga classes or I was offered another drug.
One day I Googled the word Halcion and found that it was banned in several countries but not Australia where I live. I also found a forum called TRAP and they guided me to cross over to Valium and taper off the drug slowly once I stabilized.
I am now 6 years benzo free and I still suffer the effects of these drugs. I had problems with adrenaline throughout my taper and ended up with Adrenal Fatigue soon after I finished. My central nervous system is very weak as is my immune system. It has cost me many thousands of dollars to get myself well enough to get back into the workforce.
I periodically feel very angry with the doctors who prescribed these drugs to me without a word of warning about them and those who have given me so much incorrect advice on how to taper or survive the withdrawal process. This led me to write my own book and advise others to free them selves from the tyranny of these medications.
I am a 40 year old cardiologist from the state of Texas, and I have been harmed by benzodiazepines. I was prescribed Xanax 0.5 mg three times daily as needed by my primary care physician during a health crisis in August 2015 (severe dry eye syndrome). I started out taking Xanax 0.25 mg nightly only as a sleep aid, as my eyes felt like sandpaper and were interfering with my sleep.
After only a few weeks, I began to experience severe anxiety during the day, which required more Xanax (up to 1 mg per day). I began to think that I was going crazy. I also developed a tremor and underwent an extensive neurologic evaluation, including a lumbar puncture that resulted in a severe spinal headache and an ER visit for a blood patch to stop the leaking cerebrospinal fluid. Xanax was never suggested as a cause for my tremor, although my dose relieved the symptoms of the tremor. It got to the point where I needed to dose every 6 hours as the Xanax would only last a few hours, then I would experience severe symptoms like difficulty breathing, chest tightness, and inability to swallow. I lost about 15 pounds (I am only 5’3” and got down to 115 pounds). I looked like a skeleton. I was terrified to be alone. I would wake up at night after 3 hours of sleep with my heart pounding and in a sheer panic.
After doing my own research, I discovered that I was experiencing inter-dose withdrawals and had become dependent on Xanax. I tried to taper off directly, but the symptoms were too strong. I spoke with my primary doctor and told her that I was sure I was dependent on Xanax and wanted to taper off. She told me that my problem was all anxiety as I had only been on the Xanax a few weeks, so I could safely cold turkey. She basically treated me as if I were crazy. I knew that I would be unable to cold turkey given the severity of my symptoms. She gave me a prescription for Lexapro which increased my symptoms, and I stopped it after only 3 days. She also gave me enough Xanax to complete a rapid 2-3 week taper.
Fortunately, I found the Ashton manual and Benzobuddies support group online and scheduled an appointment with the best psychiatrist in town. I brought him a copy of the Ashton manual and told him I was interested in tapering off Xanax by crossing over to Valium. Fortunately he listened to me, agreed that I was indeed dependent on the Xanax, and he agreed with my plan to taper off with Valium.
During a period of about 5-6 weeks, I crossed over to Valium while weaning off the Xanax. Once I was on a stable dose of Valium (15 mg daily), I began my taper. I have been tapering Valium since January of this year and have proven to be very sensitive to withdrawal symptoms. I am currently down to 8.5 mg daily.
I experience a host of benzo withdrawal symptoms (I had none of these prior to starting the drug), the worst of which include a pounding heart, tremor, severe nausea, low appetite, insomnia, muscle spasm, severe acid reflux, severe constipation, confusion, anxiety, and depression. I constantly live in a state of terror and “fight or flight” mode.
My life is quite frankly a living hell. There have been times after cutting my dose where I have been in so much despair from my symptoms that I have considered ending my life. My mind constantly tells me that I will never make it, and that I will never get better. The only thing that has kept me going is the fact that I have a husband and 5 year old daughter. Honestly this is probably the only reason I have not ended my life.
Just to be clear, I do not have any intention of ending my life. But I still am left with these feelings of impending death. I have persevered through much and will continue to persevere. I have learned and am still learning to deal with my symptoms. Fortunately, I made the decision to become a stay at home mom several years ago so I do not have the requirements of my work. There is no way I would be able to handle them from either a cognitive or physical standpoint. I have had to hire a nanny to help me with my daughter and household chores as I do not have the energy to get everything done, and there are days I am not safe to drive. My life is currently severely impaired. I cannot travel and I struggle to do day-to-day tasks. My entire family has been severely affected by my withdrawal syndrome.
As if benzo withdrawal were not enough, I was diagnosed with breast cancer at the end of April after having a biopsy done on a painful lump I found on self exam. I had just made a cut to my Valium dose 3 days prior to the diagnosis, and instead of going back to my current dose at the time, I stuck it out. I spent a week with little sleep, awake in my bed all night shaking with terror.
I underwent double mastectomy with tissue expander placement on 6/1/16. The surgery was successful but recovery was much harder for me due to the taper. The tissue expanders were placed under my pectoralis major muscles and I went for saline fills every 2 weeks (I required a total of 6 fills). The pectoralis muscle spasms were excruciating and were exacerbated by my Valium withdrawals.
Although I held my Valium dose constant before and after surgery, I experienced increased withdrawal symptoms about 3 weeks after surgery (I am assuming the anesthesia and other post-op meds increased the Valium levels in my system temporarily, and I went into withdrawal when the meds wore off). Again, I spent a week with little sleep, lying in bed shaking, all my muscles spasming, including my painful post-operative chest. My symptoms were so bad that I considered updosing, but after discussing with my psychiatrist, I decided to ride out the storm and was able to stabilize.
In all this time of tapering, I have never once taken an extra dose or increased my dose of Valium. I was fortunate that my lymph nodes were negative and my surgeon was able to get clean margins on the tumor. I was staged at 2A and fortunately did not require chemotherapy or radiation. I was started on the hormone blocker tamoxifen which has somewhat complicated my taper due to the removal of estrogen from my body. I spent the summer in physical therapy dealing with my chest muscle spasms, which have greatly improved, because of the skill of my therapist and my dedication and perseverance.
After about 6 weeks after my surgery, I felt ready to resume my taper. I have most recently cut down to a total of 8.5 mg per day and am holding at this dose in anticipation of another surgery to exchange my tissue expanders for implants in early November. I am of course nervous how this will affect my withdrawals. It’s interesting that cancer has been nothing compared to the horror of withdrawals, and I have heard that from several other cancer patients I have met along the way.
I am writing this letter because I would like to help stop this from happening to more patients. I am angry about what has happened to me, and to so many other people. I am a member of the web forum Benzo Buddies, and I have met so many people that were put on these drugs by their doctor without being informed of the possible consequences.
I will tell you as a physician, that we are not trained about the severity of benzodiazepine withdrawal syndrome or the differences between the half lives and potencies of the various benzodiazepines. I attended medical school at the University of Texas Southwestern in Dallas, where I graduated Alpha Omega Alpha (top 5% of my class) in 2001. I did my internal medicine training at Washington University in St. Louis. Both of these are highly respected medical institutions. I was taught that benzodiazepines are potentially “addictive”, that they are not a long-term solution, and they need to be tapered off if used for more than a few weeks. But I was never educated about things like inter-dose withdrawal, tapering methods, severity of the withdrawal syndrome, and difficulty in discontinuation of the drug. These were not drugs that I used in my everyday practice as a cardiologist, with exception of IV sedation for a procedure. I thought I was safe by taking a low dose of Xanax for just a few weeks and could come off fairly easily. I was mistaken. If this can happen to me, a physician who graduated at the top of her class, it can happen to anyone. I bristle when I hear the term addict in reference to these drugs. I am not a person with a history of substance abuse, nor do I have a tendency towards addiction. I am tired of putting these poison pills in my body. But unfortunately, I am chemically dependent, and the drug that is poisoning me must be tapered slowly to keep me from becoming extremely ill.
I propose that there needs to be better education in medical schools and among practicing physicians, especially in the fields of primary care, psychiatry, and oncology where these drug are used frequently. I also think there needs to be better regulation of the prescribing of these drugs and it should be mandatory to obtain informed consent from the patient.
I will leave you with this thought. On my pharmacy pick up window, there is a sign that reads “Must show ID for all controlled substances for pickup”. I have picked up my Valium prescriptions monthly since January and have never once been asked for ID. No ID required for a drug that sudden discontinuation can cause seizures and death. No ID required for a drug that is considered to have more severe withdrawal than from heroin. No ID for a drug that has been implicated in numerous deaths from overdose (often in combination with opiates). No ID for a drug that has caused numerous suicides from the sheer horror of the withdrawals. Things need to change. I am not the only one struggling with this horror right now, and this madness must be stopped.
Laura Christine Huff, M.D.
I wanted off but the doctor wanted me to taper 2.25 (which was at the time in January) to 1mg in one month! I refused. Tolerance continued. I was feeling toxic. so I end up on the 3 mgs around March. My doc wanted me to go to a psychriatrist. It was hard to find one. Finally, I found one but had to see a therapist first. then the doctor dismissed me. While at the theropists I was to go to a Nurse Practitioner who wanted me on Remeron. I refused. so when I finally got to see the Psychiatrist, she abruptly switched me over to 55mg of diazepam to taper. The reason is: She said, "Clonazepam is hard to come off of and can kill you".
She was angry at the doctor for putting me on such a high dose then sending me to her. Well, this doctor also prescribed 10mg of Lexapro. When I weaned down to 45mg of Diazepam, the diazepam and Lexapro combination was too much and I had suicidal idealations. I was admitted to the hospital where there they jumped me down from 45mg diazepam to 10mg and watched me. I had no seizures but my pulse was low and after being tested for heart problems, I was fine. I was eventally sent home after 6 days.
I continued to taper. when the Lexapro kicked in after 6 weeks. I did not like how I felt so I started tapering down myself. When I got to 2.5 mgs Lexapro, my PCP told me to get off and take some Benedryl because I was not feeling right. Then 2 weeks later when I had tapered to 2 mg of diazepam, the psychiatrist jumped me down to 1mg saying "It is such a low dose."
I waited for a whole month before resuming my taper after that. She wanted me off the final 1mg. but when I came to her office and she realized (finally) that I was not doing well, she let me do liquid diazepam and let me get off as slow as I needed to. I finished the taper at the end of August 2016.
This has not been an easy journey. In fact, it was the hardest thing I ever went through. I had broken sleep, surges throughout the night, fear, racing thoughts, feeling overwhelmed easily to any stress. Just thinking about something that needs to be done throws me in a tizzy. burning back ,head and arms, feeling like going crazy and gut problems and feeling not myself. At times I asked God to take me home. Here I am almost 10 months out from finishing my diazepam taper. There has been some improvement. but I am still healing. These drugs are to be prescribed no longer than 2 weeks. Here I was on it for 8 months before taper. A total of a year including taper.