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EXPERIENCES IN BENZODIAZEPINE WITHDRAWAL SYNDROME

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24 entries.
Hendy Hendy from Indonesia (Country) wrote on March 12, 2019 at 2:57 am:
First of all please excuse my English as it's not my primary language.

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.

• proctitis
• 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!

Best regards,
M. Hendy A.
Edward Stack Edward Stack from Brooklyn NY wrote on March 1, 2019 at 11:39 pm:
My Ongoing Nightmare started in 85 when I refused to take SSRI's due to side effects for anxiety and GAD disorder. So the doctors put me on Klonopin and Perphenazine, Stelazine, Wellbutrin. By 92 my teeth were chattering uncontrollably and had muscle spasms. So I started a taper and got off the Stelazine, and Wellbutrin but still lost my job in 98. After being fired again due to a company merger in 2010 my Clonazepin and Perphenazine dose went up from 2mg to 4mg per day. Doctor was giving me advice to take 6-8 mg per day which I never did. In 2/18 I went to fill the Clonazepam and felt dizzy, from that moment hell opened up. Felt anxiety, Terror, nightmares, Sensations that made my head feel that there was air inside it. Went through DErealization Depersonalization. By Aug 18 with this conditions getting worse and no sleep for 3 months my doctor put me on Buspirone. This caused serve case of vertigo so bad felt I was in the middle of a tornado. This effect is still, ongoing I Was housebound for 4 month's now. Lost 28 pounds as well. As the summer went on needed Ice packs for my head as my brain was on fire. Then one day in Aug. felt a sensation of actually having a bag of water in my head. Became very dizzy and weak. The next day this lead to a sky diving feeling and my brain had air pockets in it. In sept last of two sensations felt a sweet cotton candy paste in my head which covered my left side. I believe the pills were effecting the layers of my brain the dura and arachnoid This lead to an intense dry feeling and deep tremors like a radio frequency from deep inside my head. All MRI's come back normal. To this day My brain still feels electrically dead. with a balloon stuffed into it. My balance disorder was PPPD. I stopped the perphenazine back last year on 1mg of Clonazepam but feel animated and each cell of my brain feels like rubber or spongy. Brain is floating doing a dead spin.Housebound for 12 months now. TV looks like 3d people look hollow distorted. Had ear Hallucinations which freaked me out. See visual snow. Even when I tried to taper this it got worse. I am happy to hear most people here got better. Trying to walk is impossible for me due to pppd and heavy headed spongy feeling. 57 years old and pray this could end. Sad doctors have no clue, you go through all these sensations and torture yet everything shows up fine and normal in tests. Scared to do anything physical due to condition getting more unpredictable. Can anybody help?
Marcia Marcia from Colorado Springs wrote on January 18, 2019 at 12:10 pm:
I'm 70 years old and for most of my life, I've experienced depression and anxiety. I sought counseling since the age of 18 and was prescribed psychotropic medications for the better part of 50 years, being labeled with Borderline Personality Disorder, Major Depression, Generalized Anxiety Disorder, Panic, and Bipolar Disorder. In 1995, I suffered from non-stop panic attacks. When beta blockers did not help, I was prescribed Clonazepam as well as an anti-psychotic. I remained on both until 2015 when I finally began to question the roots of my symptoms. In September 2015, I was finally diagnosed with late-stage Lyme disease and co-infections, which I now realize I had contracted in childhood. I learned that these infections were at the roots of my symptoms. In all the years I was taking these psych meds, not one doctor ever questioned why I was taking them or what could be causing my symptoms. They merely continued to treat the symptoms. Since 2015, I have tapered off the Seroquel and the Clonazepam and went through many months of hellish withdrawal from tapering off the latter. I've now been off these drugs for two years and two months. It breaks my heart that doctors continue to treat symptoms without searching for the root causes. In my case, as in the case of numerous others I have spoken with, infections were at the root of their anxiety, panic, and depression. I now know that Lyme disease (contracted in childhood) affected my brain in a huge way, causing the neuropsychiatric symptoms. Though I may never be free of the depression and anxiety, I refuse to EVER put these medications into my body again. They are dangerous and can cause permanent damage...as they have in my life.
Peter Peter from British Columbia wrote on September 10, 2018 at 12:33 am:
I've been off benzodiazepines for 10 years and still have symptoms. I felt recovered for about 3 years, and then got hit again at 7.5 years off.
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.
Hypertjeee Hypertjeee from Amsterdam wrote on August 18, 2018 at 1:29 pm:
Hello dear people,
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
Samuel Samuel from Singapore wrote on July 12, 2018 at 4:16 pm:
“Go to the school clinic, he has something for you,” said my school counsellor. I had approached him for his services as well really stressed out by exam. Somehow or another, he had gotten the doctor to prescribe me Lexotan. I took it for 2 weeks, oblivious that it was a benzodiazepine. I convulsed at every worry about exams and laid sleepless in bed for 5 days in what I can only call pure terror and adrenaline. An emergency trip to a private practice psychiatrist labeled me GAD and depressed, and dosed with anti-depressant and anti-psychotics. It mad things worse and I felt pure rage one day and started smashing furniture as my head pulsated. My parents, alarmed by my behaviour, brought me to the hospital where I was shaking uncontrollably and was sedated. Next thing I knew, I woke up in the psychiatric facility and dosed with yet more benzos. And indeed, I was able to stay calm because of the benzos. Once out, I laid in bed, my legs spasming uncontrollably, my heart palpitating non-stop and strange hypnic jerks that would terrorize me before falling asleep. It last for a month, and I thought everything was over. But there was always this itch at the back of my brain that would flare up whenever I was stressed.

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.
Dorothy Dorothy from Fond du Lac wrote on July 3, 2018 at 2:35 am:
So glad I found this site. I feel hopeless, dead inside.
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
john w. cosgrave john w. cosgrave from portland, oregon wrote on June 19, 2018 at 5:26 am:
I posted my cotact pdx819-4772, because the "secrecy" surrounding the holocaust of phychiatric drugs is criminal and has been ongoing for many decades I too have been victimized as I believe millions others have, in my case an Ativan and desipramine "cocktail" started in '93 then switched to Effexor Ativan '99 when Desipramine "pooped out" has destroyed a life that 15 years ago was still promising after a decade of harm already inflicted by anti depressants and benzos . The fact that I was given these drugs with no guidance and no warnings and under a false pretense of a chemical imbalance is beyond negligent and this goes on across the globe 100,000 times a day new victims are created every day - this is no different than the holocaust when many who knew remained silent and cost the suffering and murder of many which could have been prevented.

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!
SCOTT SCOTT wrote on June 12, 2018 at 6:59 am:
After 13 years of benzodiazepines 6 months Xanax .5mg X2 daily, 12 years Clonazepam from 3mg to 1.5mg daily, 9 years Zolpedem 10mg daily.

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!
Jason Jason from Waldorf wrote on June 12, 2018 at 6:58 am:
My journey started in 1999 when I started having vertigo and anxiety attacks after a brutal divorce, I was looking to try to see what was causing the vertigo and ended up seeing a neurologist that eventually put me on a cocktail of medications for a “minor seizure disorder”. One of the medications was Klonopin. Another doctor diagnosed me with Ménière’s disease which I had surgery for. So once I did that I tried to get off of the Klonopin and I just couldn’t seem to get off it so I went to psychiatrists over the years thinking it would help, which it seemed to do. But I noticed every psychiatrist I went to at some point tried to get me off of the Klonopin always too quick with bad results. Fast forward to this past October 2017 when my job required me to get a DOT card, the doctor that saw me said “I can’t pass you on the benzos”. I was like what is that? So I went to my psychiatrist and she started a taper plan which was cut off half each week. So I started that taper not knowing the consequences, eventually about a week or two I started feeling horrible, having tremors, hallucinations, and hearing things. I tried to commit suicide so the police had to strap me down to get me out of the house, so I ended up in the behavioral health unit and was given antipsychotics. After a week of that I was sent home and my muscles started tightening and I was sweating really bad so I ended up back in the hospital where they found out I had rhabdomyolysis, so they put me on an IV for a week, eventually I reinstated on the Klonopin when I was in the hospital. So I started feeling better so they sent me home and eventually I went back to work. A few weeks later I started feeling bad again so I started researching what could be wrong and if there were any rehabs for benzos. So in my search I found a friend that was knowledgeable about benzos and directed me to the group, and I learned about the Ashton Manual and that I am having tolerance withdrawals. I am currently in a slow taper which seems to be working out. I wish all doctors were required to follow the Ashton Manual for tapering off of Antidepressants it could save lives and is the most humane way to do this.