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EXPERIENCES IN BENZODIAZEPINE WITHDRAWAL SYNDROME
I never wanted to be part of this tribe, the tribe of those withdrawing from a benzodiazepine drug. No one would ever voluntarily go through such a horrible, life-stripping experience.
After my sister was killed, I was traumatized and suffered from panic attacks (shortness of breath, heart palpitations, and a fear of losing control). I lay awake night after night imagining what she experienced in her last moments. After enduring this for months, I went to a psychiatrist who misdiagnosed me as having general anxiety disorder and told me start taking clonazepam, a benzodiazepine. He did not tell me that the FDA has approved benzodiazepines to be taken for only two-four weeks. Nor did he warn me of dependency, the psychological and physical torture, or the disastrous effects on my employment and finances this medication would cause. At no point was I informed that the one milligram of clonazepam he prescribed is equal to 20 milligrams of Valium and that suddenly stopping the medication can cause seizures or death. I doubt that the psychiatrist even knows these things. In my extremely vulnerable state, I trusted him and blindly took the medication that would turn my world into a living nightmare.
In August 2015, after seven months of taking clonazepam, my insomnia came back with a vengeance, and I started researching the medication. I discovered that all benzodiazepines are concentrated sedatives that hijack and imitate GABA (gamma-Aminobutyric acid), the master calming neurotransmitter that is present in all nerve cells. GABA is involved in cognition, sensory integration, memory, sleep, motor function, respiration, heart rate, and digestion. I realized I was in “tolerance,” meaning that my brain’s GABA receptors were downregulated, and I would need more and more of the medication to produce the same calming effect.
I was devastated to learn that benzodiazepines are more addictive than heroin or cocaine, with agonizing withdrawal symptoms that can last years as the brain’s receptors struggle to upregulate and produce GABA again. I also learned that tolerance to and withdrawal from benzos can wreak havoc with the stress response in the body, as they cause one’s adrenal glands to produce higher amounts of cortisol. The drug that works so well for anxiety at first, exponentially increases anxiety, panic, insomnia, and pain later. A cursory search on the Internet did not reveal all of this; I had to look deeper to find the truth from the survivors of these drugs.
The magic pill had turned on me and I needed help, but finding someone who could help me safely taper from the medication was a surreal experience. After making dozens of phone calls, I found a psychiatrist who claimed I could taper off clonazepam in two weeks. I tried tapering according to this insane plan and was practically psychotic. I couldn’t breathe, my cortisol levels were sky high, lights were too bright, sounds were too loud, and I became agoraphobic and unable to function. The psychiatrist condescendingly blamed me for being overly anxious and wanted to prescribe more medications. I felt like I was being gaslighted, told that my symptoms weren’t real, which only added to my distress.
It is devastating to be abandoned to deal with this on one’s own without the support of a medical professional, but unfortunately, this is a scenario all too familiar to the millions of people who take these medications as prescribed.
Left with nowhere to turn, they turn to each other via Internet groups like Benzo Buddies and dozens of Facebook support groups for advice on how to safely taper the medications. Despite their own suffering, selfless and kind strangers walk one another through this harrowing experience.
So, how did my journey end? I never did find a doctor in the Washington, DC area (even though it has at least four university-affiliated hospitals) who could help me safely taper off clonazepam. I ended up getting support from the Point of Return program, experts in prescription medication withdrawal, whose protocol includes supplements, diet, a private discussion forum, and unlimited support by telephone. In November 2015, my husband and I flew to Texas and met with one of Point of Return’s consulting physicians for three hours. He reassured us that with a slow and steady taper, I would get my life back. I was in protracted withdrawal, barely surviving on next-to-no sleep, and scared out of my mind, but I flew back to Maryland knowing I finally had a doctor who “got” benzo withdrawal.
After nine months of struggling to keep up appearances, I was too ill to work, went on unpaid leave and eventually resigned. It was devastating to leave the job I loved and to lose our health insurance and prescription plan, which we now pay for out of pocket. The months dragged as I slowly tapered the medication, enduring symptoms that defy description. Physical symptoms included horrible insomnia, muscle fatigue, weakness, tinnitus, air hunger, cortisol surges (also known as “benzo rage”), painful swollen glands, burning eyes, diarrhea, and occasional nausea. I felt like a living corpse and lost 30 pounds. But it was the brain impairment issues—poor motor control, dizziness, derealization, depersonalization, the inability to mediate most sensory input, almost constant terror, and the dark, dark sense of hopelessness and despair—that were most distressing and overwhelming. I felt like I was losing my mind.
During the winter and spring of 2015-2016, I often sobbed uncontrollably, with my husband beside me on the couch. What was happening in my brain was so alien and frightening. Sometimes I didn’t even recognize myself in the mirror. This took a toll on my husband and daughter, who made many sacrifices so I could get well. I can never thank them enough for believing me and supporting me. I am very lucky; many people go through this alone, or their spouses leave them and children become estranged because they just can’t handle it.
In August 2016, a full year from the beginning of my taper, I began to have “windows,” a term used in the benzo community for feeling normal. These are the times one’s brain is actually “online,” and one feels whole and present. The times when one can go for a walk, sit in an outdoor café and laugh with friends, or watch a movie and actually follow the plot. The times when one can leave the hell of self-involvement and focus on others again.
I began to have more hope. Each window was like a break from the Stephen King thrill ride, a glimpse of the life that was waiting on the other side of hell. I finished my taper in November 2016, but was not well enough to work for a full year afterward (mainly due to crushing insomnia and weakness). After tapering, I found an excellent trauma-certified counselor and was finally able to process the worst of the trauma around my sister’s death. Today, I am so grateful to be sleeping and managing my chronic pain without psychiatric drugs or pain meds.
I learned a lot in benzo withdrawal. Mostly I learned that what really matters is other human beings and that we care for one another. Because of the Internet, I have met some remarkable benzo warriors who always have time to help others. Rich, poor; red state, blue state; young, old—we are bonded together like family through our shared experience of suffering that defies description.
As I said earlier, I never asked to belong to this tribe. I would like to pretend that my 27-month battle with the benzo beast never happened. I do not want to be stigmatized, misunderstood, or judged. But it did happen, and my life will never be the same. And these incredibly big-hearted benzo warriors, all of whom also did not ask for this crucible, are now my tribe, and I am grateful beyond belief to know them. This book is for them.
(Note: Please don’t ever cold-turkey or taper any psych med, including antidepressants, antipsychotics, or benzodiazepines, without carefully researching the medication and working with a medical professional.)
I want to share my story about benzodiazepine (BZ), how I withdraw myself from this drug for after about totally 17 years of use along with other psych drugs, as prescribed by psychiatrists. This phase of my life is one of my hardest times, as I'm sure many of you fellow BZ victims also feel the same way.
I was prescribed benzodiazepine (xanax) and other psych drugs by a psychiatrist when I was about 15 years old (around the year 2000), to help treat my OCD (Obsessive Compulsive Disorder). Just like many of you, I took those drugs without any suspicion, as I also didn't get any patient informed consent from my psychiatrist. My paradigm at that time was like many of you might also have in the past: take those drugs to finally be cured from OCD then continue on life. I thought drugs were the only solutions to cure any diseases, including what is considered as psychological disorder like OCD.
Long story short, I took BZ and those other psych drugs like antidepressant and antipsychotic for totally about 17 years. During those years my body kept giving off symtomps of organ damage but I wasn't aware of those, because when I took BZ I immediately felt better - indeed I knew I was already dependant on BZ at that time - I felt terribly sick whenever I tried to skip / stop my daily BZ dose. For example, I had severe itching all around my body - which was revealed later as liver damage - but when I consulted my other psychiatrist he didn't have any clue and couldn't connect the dot between my itchiness, my underlying liver damage and psych drugs. I also remember gaining excessive weight (about 80 kg / 176 lbs) in around 2012 while still consuming psych drugs – a metabolic problem which I later attributed heavily to the consumption of antipsychotic drugs. I remember having severe choking, breathless sensation, after – if I remember correctly – I took prescribed med given by my dentist at that time. That sudden loss of breath resulted in me being treated in emergency room at the hospital – perhaps treated with corticosteroid injection. Later on I suspected acid reflux – perhaps caused or worsened by my overweight body at that time – as the primary cause for that incident – not solely from the med my dentist gave – although I do tend to get allergic reaction from drug easily since I was a child.
My highest xanax dose before I did the withdrawal was 2 mg, daily.
It was one day when finally my psychiatrist told me to taper from BZ - after all these years - stating that it was dangerous, although he wanted me to keep consuming other psych drugs besides BZ such as the antipsychotic.
In my first phase of my BZ taper, my psychiatrist guided me. I also managed to get off from all other psych drugs at that time.
My second phase - which was the last - was me successfully tapered and finally got off BZ for good - this time without my psychiatrist's guidance. I can remember cutting the pills with my own nails near the end of my tapering phase, resulting in the pills consumed smaller and smaller. I was finally free from benzodiazepine and all other psych drugs on April, 2017. My BZ tapering period was about 1.5 year.
The following years after that was what I called ‘hell on earth’. I almost died from many damages in my organs, mainly inflammation which occurred almost simultaneously - I was sure those damages were mainly caused by psych drugs.
Below is my confirmed diagnoses via medical tests (I hope I don't forget anything in mentioning my diagnoses here) - keep in mind that many of these medical tests - which resulted in many significant findings in my diseases were in fact requested by me to doctors & specialists, mainly from my own relentless internet research:
• periodontal disease (inflammed gum - I did dental surgery for this)
• GERD (acid reflux)
- I suffered from what I suspected to be sleep apnea from having acid reflux; I frequently woke up from my sleep at night, gasping for breath that suddenly stopped
- later on I was certain that mine was more of LPR / silent reflux rather than regular GERD.
• gastritis (stomach inflammation)
- I lost lot of weight (about 20 kg / 44 lbs) from having this condition - basically looked like a skeleton. Thankfully, now I'm on my normal range of weight as my stomach gets significantly better. It took about a year, though.
• appendicitis (I did appendectomy (a surgery) for this)
• NASH (basically means inflammed fatty liver, which is an advanced form of fatty liver, although my hepatologist said my NASH was still on its early stage)
- Because of this liver problem, besides many other symptoms, I also experienced significant hair loss especially in the early phase post withdrawal, but now my hair has been growing back as I keep healing my liver. Sometimes little hair loss occurs again if I eat / try to reintroduce foods that my damaged liver couldn’t yet handle, but as soon as I fix it, the hair grows again.
…as well as many other undiagnosed symptoms which I had to reasearch and/or help myself such as:
- DP (depersonalization) and desynchronization in talking, moving and typing in the early phase post withdrawal, which resolved themselves eventually in a relatively short time, although sometimes a little sensation of DP and talking desynchronization can still resurface, however vague and nonfrequent they are now.
- histamine intolerance
- bone and/or joint pain / weakness / cracking
- suspected nephroptosis (floating / mobile kidney), which keeps getting better mainly by doing yoga for this suspected condition, among many other supporting elements such as self-massage and nutrition that also help
- suspected blood sugar issues, shown by frequent hunger despite of eating and waking up at night 1-2 times to urinate
I've been treating myself using nutrition and supplements, having learned as much as I can via internet as no doctors could really help me or find out what really happened in my body.
I'm now past my crisis phase, I keep getting better, I feel I almost get fully healed, although I know it's still a very, very long time from now. At least I feel I'm on the right track to recovery. I’ve felt a significant progress in my healing since March 2019. One thing I can say for certain: despite some pain I still have, I feel much healthier now compared to my old self when I was still on those psych meds.
As for my OCD, from my internet research, watching many great, experienced mental health experts and psychologists, I'm convinced that ERP (Exposure and Response Prevention), a behavioral therapy, is the key to manage OCD successfully – not drugs – alongside other supporting elements such as nutrition and exercise.
Maybe what I can advise you fellow BZ sufferers, especially the new ones, is to keep searching for your own body problems. Don't get discouraged if doctors are laughing at you, don't believe you, telling your problem is only in your head, or wanting to give you another psych drugs since they tend to believe you as hypochondriac (health anxious person) due to your stopping psych drugs - believe me, I experienced all those things myself which were really frustrating. Be your own health advocate – after all, when you get sick, it is you who feel the pain, not the others.
To be successful in identifying your disease from many symptoms you might currently have - if your doctor is clueless, searching the internet in really thourough manner, I believe, really helps - as it did me. Having correct test(s) that can find out your problem(s) is the next important step – I can’t tell you how many times doctors were mistakenly said I was okay because of my normal test results, laughing at me, pushing BZ again, only to find out later from requesting another form of tests – the correct ones – that I did have organ problems!
Consulting doctor of functional medicine is also a great way to achieve true healing. Functional medicine is a discipline which differs from conventional medicine mindset as it addresses the root cause(s) of your disease(s) mainly by using nutrition and supplements. It knows how the body organs are interconnected and how nutrients affect them - it's all about holistic approach to truly heal the body.
I personally believe that anyone who has ever touched benzodiazepine or other psych drugs should cleanse their liver, the most important organ in the body which can give you many symptoms if damaged.
I also believe that many symptoms that can be attributed to benzodiazepine withdrawal are not due to the withdrawal itself, but due to the organ / other inner body damage this drug causes, therefore, finding out what really happens inside your body, and from there, addressing the underlying cause(s), really means true healing, as it is in my own case.
I’d like to finish this writing with a big thank you to benzodiazepine withdrawal support forums / groups / pages / experts. It is you guys who made me feel I was not alone and gave me extra push during my darkest hour in this fight, when everybody else – except the ones who really loved me – left me alone. Your dedication is greatly appreciated. Please keep spreading awareness about the danger of benzodiazepine and other psych drugs as well as being great supporting platforms for victims of these drugs.
I hope all the best to every one of benzodiazepine or other psych drugs victims. Be strong and never ever give up. Correct knowledge is the key!
M. Hendy A.
I was prescribed both Ativan and Xanax concurrently in 2006 for about 10 months due to anxiety and stress, along with antidepressants. I had adverse reactions to these drugs right away, however I hung in there as I was led to believe they would work from a psychiatrist. I was told they were not addictive! Long story short I rapidly took myself off because I was feeling worse and worse due to reactions, tolerance, interdose withdrawal. Then all hell broke loose; suffered extreme symptoms. I finally found out what was wrong from the internet/Ashton manual; I reinstated and was able to taper off with valium in 2008, but the damage has already been done. It took 4 years to feel recovered from this; then felt close to normal for about 3 years. I then went through a lot of stress, consumed alcohol, was run down, took cold and allergy meds. It all came back, felt just like acute withdrawal. Just as bad as the beginning.
So I'm still dealing with this, although better than when it first came back. Good days and bad days. It's been absolutely horrible, but I still hope to recovery from this one day.
I am from Holland . I had a sonuc attack 5 weeks ago couldnt sleep had anxiety and also did not breathe well so my doctor prescribed me oxazepam (serax) 10mg a day
I used it for like 20 days but it made me more sick but the doctor said no that is not the oxazepam that is supposed to make you better
I said i want to stop she said you can coldturkey cause your dose is low and you did not use it long
I said i read that is not a good idea coldturkey i want to taper, no there is no tapering schedule for that dose
So i tapered it myself off , i tapered for 6 days broke the pill in half so i had 5 Mg for 6 days after 20 days on 10mg and since 7 days i quit totally. And i have real serious withdrawall symptoms like : dizziness nausea muscle pain stomach aid , but the worst is dizziness that doesnt go away
Can someone please tell mee when the withdrawall symptoms will go away perhaps someone who also used a low dosage and for short time ?
Thank you very much
Love from Holland
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!