Who knew a harmless prescription by a trusted physician would destroy my life and health? For half of my twenties I experienced bizarre symptoms that didn’t fit any specific diagnosis. They seemed to mimic several chronic and rare illnesses, and so I subjected myself to invasive tests and saw upwards of 70 specialists in search of an accurate diagnosis and help. Apart from the occasional scare, and one cancer misdiagnosis, everything came back normal. I was falling into the “all in your head” category.
Fortunately in 2014, the medical mystery was solved. An extremely competent psychologist was able to identify the surprising source: prescription Ativan, which I had been taking daily since 2009. The Ativan was initially prescribed to prevent seizures after an accident. At the time, I was only provided with a bland warning about the medication’s potential for addiction, and was otherwise assured of its safety. I took it exactly as prescribed. I even asked a few of my specialists if the Ativan could potentially be responsible for my problems. They assured me it was not. However, it started to be the only thing that had made sense in years. Everything fit. The timelines of dosing, the potential side effects I wasn’t warned about, and a strange period with a bad interaction with fluoroquinolones that is, known to me now, notorious for interacting poorly with those with benzodiazepine physical dependence. While I was very angry that I wasted years of my life chasing a phantom illness, I also felt a sense of relief. I could get out of this nightmare. There was now, finally, hope for escape— I could rid myself of the medication and move on with my life, maybe with fully-restored health.
Not so fast.
Consulting the Experts
I quickly discovered one monumental problem: modern medicine is largely incompetent regarding benzodiazepines. This is especially surprising considering benzodiazepine withdrawal is one of the deadliest known to medicine. Everything physicians suggested not only failed, but also made the situation much worse. Some of the ideas posed, that I would discover later were potentially deadly, included: abrupt cessation, admission to a detox center, a rapid month-long taper, removing one dosage per week, switching amongst different shorter- and longer-acting benzodiazepines (usually at incorrect equivalence rates), taking two benzodiazepines simultaneously to “cancel out” the symptoms, adding random medications, placing me in a voluntary coma, and, most upsetting and unhelpful, total denial of the problem altogether. Two physicians even “fired” me as a patient, implying I was a liability. It was as if I was being gaslit. I lost confidence in medicine altogether, but kept trying. This couldn’t be. Surely, somebody would eventually know what was going on?
But nobody did. The explanations, medical opinions, and proposed options just continued to get more preposterous, finally culminating with a few doctors admitting, “This just happens to some patients. I don’t have a clue what to do for you. You should stay on the medication for the rest of your life.” I was stunned. No answers were available at all? Their solution was simply that I was stuck in a hell of their creating for the rest of my life with no help? A lifetime of feeling this way simply wasn’t an option for me. Not to mention I had many concerns around the risks of taking benzodiazepines during pregnancy, and wanted the benzodiazepines out of the way before starting a family. The reality of my situation slowly sunk in: I was trapped on a medication that was making me sick, that I didn’t want to take anymore, and I was completely on my own to figure out how to get off of it.
The Online Benzodiazepine Community
Backed into a corner, I Googled. Much to my relief (and simultaneous horror), I was not alone by any stretch. I discovered many Facebook benzodiazepine support groups and a forum called BenzoBuddies— their collective memberships totaling over fifty thousand people. None of the people in the groups were surprised. They, too, had similar experiences with useless and often detrimental direction from their doctors in their own attempts at cessation. Beyond some much-needed commiseration and validation, the groups provided what I wanted the most: solutions. They warned the process most likely would not be easy, as a certain percentage of patients can have complicated and painful withdrawals. I didn’t care, I was all in. I finally had an understanding as to what was going on and a plan to follow. I was willing to give up everything to recover my health. And I almost did.
From the communities I learned that the strange cluster of symptoms I had been experiencing for years was from a few things: dose tolerance, interdose withdrawal, and side effects. It was stressed that benzodiazepines must be tapered slowly, about a year or more, often longer. The community strongly discourages abrupt or rapid withdrawal at home or in detox/rehab centers due to the increased risk for severe withdrawal (seizures, psychosis, an agonizing movement disorder called akathisia, and/or suicide) and protracted withdrawal syndrome. The goal in a slow taper is to keep a stable serum level, maintaining even doses throughout the day, and to slowly titrate at a tolerable rate. For me, I would discover, there is not a completely tolerable rate, just a less severe one. Finally, I was told that, even after completion of a long, slow taper, some people would require another year, or even many more, to fully recover from the medication’s damaging effects.
I began to recognize that my benzodiazepine treatment had been mishandled from beginning to end. I had not been given informed consent when initiating Ativan as I was not provided the full picture of the risks involved. In particular, the risk of developing physical dependence, a physical phenomenon much different from addiction. The medical industry often conflates addiction with physical dependence, which results in confusion and mistreatment. I discovered I should never have been kept on Ativan daily for more than 2-4 weeks, per most prescribing guidelines and FDA Prescribing Information. Every cessation method proposed to me by doctors was much too rapid and indicative of an all-too-common fundamental misunderstanding of benzodiazepines and their mechanisms of action. I also discovered I was not, as I had been told, on a “low dose” of a benzodiazepine, but a moderately high one (not that it mattered— dependence, tolerance, interdose and side effects develop at any dose). Finally, I found my doctors’ suggestions to add additional psychiatric drugs as a supposed “aid” to benzodiazepine withdrawal is specifically advised against in the British National Formulary’s Benzodiazepine Guidance.
If that wasn’t enough, I soon encountered another absurd hurdle: most benzodiazepines are are not available in dose sizes or forms optimal to cessation. Luckily, the online withdrawal community figured this one out as well. Imagining where I would be without these communities is terrifying. Most likely, I would, like so many people currently are, still be blindly medicated, in a significantly worse state of tolerance without any knowledge as to why, spending a fortune investigating symptoms, or worse, rapidly withdrawn or having given up completely.
The Withdrawal
I initially tapered using the Ashton Manual, a guide explaining both how benzodiazepines work and how to withdraw, by psychopharmacologist Dr. Heather Ashton. She is highly regarded within the community for her work running a clinic for benzodiazepine patients in the United Kingdom. Using her method, one cuts their dose by about 5-10% at once and holds until the symptoms abate, at which time the process is repeated.
In spite of my best effort, each “cut” proved to be too large for me, destabilizing me further, and creating a laundry list of new intolerable daily symptoms, including: migraines, numbness, mania, hallucinations, twitching, spasms, blurred vision, eye pain, a sensation of being on a rocking boat (similar to mal de débarquement syndrome), agoraphobia, panic attacks, hyperacusis, sensitivity to certain foods and chemicals, memory loss, confusion, unexplained tooth pain, burning nerve pain, shingles, rashes, chronic itching, tinnitus, olfactory hallucinations, hot and cold flashes, suicidal ideation, nausea, depersonalization, derealization, dizziness, insomnia, and many others.
After about a year and a half of the “cut-and-hold” method, I decided to switch to a more popular method called “microtapering”. Microtapering is essentially making small (microgram, as opposed to milligram) reductions more frequently which add up over time. For me, the microtaper made the symptoms more bearable, reducing the mania and suicidal ideations to a level where I felt safe I would not end my life, while eliminating the hallucinations. The other symptoms remain to this day prominent and disabling.
I have tapered four-and-a-half years now and predict it will take over five in total. Even at that slow rate, the process of reversing my body’s physiological dependence to benzodiazepines has completely destroyed what was left of my health and the life I once had. My constant symptoms cause physical, mental, and psychological limitations in every area of my life. Many of my relationships have dissolved, as well, with friends and family moving forward in their own lives while I remain stuck waiting on my nervous system’s slow repair.
This syndrome doesn’t have an alarming and well-known word attached to it, like “cancer” or “car accident,” that instructs people on how to help. It’s a mostly silent epidemic without any instructions for those on the inside or outside of it. Most people conclude that I must be exaggerating, or not trying hard enough, maybe I’m an addict in denial, or some other excuse that blames me, which is usually reasoned with it is unlikely to be this trapped, that something this serious would obviously be widely recognized by medicine. Not so. What it boils down to is this: Myself, and the many thousands of others in my same situation, are in dire need of non-medical support precisely because medical recognition is scarce or unavailable, yet, as a direct result of that medical repudiation, the non-medical support also abandons us.
I’m weirdly considered lucky; many don’t make it as far as me in solving their own benzodiazepine issues. They go to their graves wondering what suddenly went wrong with them. The barriers to discovery are immense. Accurate answers to the problem are not readily available, while incorrect and harmful answers are plentiful. Surviving the cessation is the hardest fight of ten lifetimes. It is long-term physical torture with zero societal validation or financial restitution. Many cannot cope and end their lives.
Forming a Coalition for Change
I firmly believe that so long as patients are given true informed consent, one’s treatment choices for their own body should be up to them. That said, it is abundantly clear to me that prescribers often cause more harm than good with this class of medication and competent resources need to exist immediately for those injured. We can’t rely on medicine or legislation as they have failed to address this issue since the 1950s. It’s also clear that patients who are already physically dependent and do not wish to withdraw should not be forced against their will. Many, understandably, don’t want to do it or are not privileged enough financially to be able to afford to try. Nobody should be forced into hell against their will, especially when they didn’t consent to the risk to begin with. In my opinion, the most critical concerns should include: medical recognition of the withdrawal syndrome, appropriate tapering methods, and research on the nature of the potential damage by long-term prescriptions.
In 2016, to fill my time and to attempt to help those who are also harmed, I founded a nonprofit called Benzodiazepine Information Coalition (BIC). We have an amazing medical board, as well as dedicated volunteers, many of whom were harmed by benzodiazepines themselves. We have had a busy 2 years, appearing in several major news outlets and participating frequently in outreach efforts. Our aim is to contribute to public awareness of the benzodiazepine problem, as well as to give both patients and professionals much-needed educational resources and information. From informed consent at the time of prescription to the proper handling of cessation, we hope to end this dark age of prescriber ignorance, thereby reducing patient injury and giving this epidemic, and the patients impacted by it, the recognition and care that is deserved.
Janice Curle was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. She founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change.
I’m a mother of 7 beautiful children and a wife, whose life has been utterly and completely ruined by klonopin daily usage to “bridge the gap” of trying different antidepressants last year. When I realized the klonopin was part of why I was so depressed and not getting better, I tapered my dosage from approximately 2 mg per night to .5 (over about 4 months) and while it was tough, it wasn’t horrendous – increase in anxiety, restlessness that would return to baseline afterwards. I held the dose at the instruction of my doctor due to some medical issues (which ended up being somewhat related to the klonopin and w/d as it turns out)…..what followed has been horrendous, an absolute nightmare that I had no idea was possible. I held at .5 mg for about 5 months before I started feeling manic, followed by new physical and mental symptoms that came out of nowhere – many of which you described above and more. I had no idea that by holding, I would be sucked into a severe acute tolerance withdrawal situation. I knew that I would need to slowly taper the remaining .5 mg but had no idea that I could experience severe hyperacusis, morning cortisol spikes, burning skin, electrocution feelings, tinnitus, agoraphobia, crying spells, tremors, severe hair loss, a feeling of rage (plus 30 other symptoms) while on this stuff. Trying to determine how to taper this remaining .5 mg at a “tolerable” rate and finding a supportive doctor has also been a nightmare. Small percentage reductions now destabilize me, as do many meds and supplements. I am so hypersensitive to everything now. I tried a small amount of Valium but got more side effects and knew I couldn’t cross over – that it would just destabilize me further. I’m now reducing at .003 mg per day or 3 of 5 days (dry cutting and weighing .125 mg ODTs since I couldn’t adjust to a liquid titration). I’m doing ok, but can feel the symptoms starting to increase a bit and so now, I’m trying to determine if I’m going too fast – I need to stay at a level that is “safe” but I know there’s no true healing until off this destructive medication- I’m already in acute according to some of the experts…..I’m stuck between two worlds. I’ve experienced severe depression/anxiety in my life but this is a HELL I never could have imagined. Inhumane suffering, physically and mentally. As the sole breadwinner of my family, I’ve had to give up my career to stay home (with noise intolerance and overstimulation, living in a home with 7 kids, that’s pretty difficult). I just want to be a mother to my children, a wife and this has stolen my life and I’m SO afraid that I won’t get off and heal. I am, however, not going to be silent. I don’t want this to happen to anyone else. It’s SO wrong – I was never warned about these dangers. I knew there was an “addictive” nature to the drug but thought as long as you didn’t have an addictive personality and tapered off, you would be fine. WRONG. In addition, I never intended to be on it daily as long as I was. I pray for all those that are suffering from this atrocity.
My personal opinion is that Ms. Curle is too generous with the medical community as a whole. I expect a majority of those ages 50-+ are fully aware of the addictive nature of these benzos, and simply want to get as many “captive patients” as possible. Not to mention kick-backs from “Big Pharma” I hope the day will come when cash-settlements to their victims, and perhaps criminal conspiracy convictions will be brought against many of those responsible for the misery they have caused. so many.
When I tell people it’s a psychiatrist who actually cold turkey detoxed me and then tried forcing me off benzodiazepines, they’re often in shock. In the six years I saw her, she readily dispensed daily Xanax prescriptions to me, even doubling to tripling my dose. I suppose it’s generally assumed a psychiatrist would try to keep someone prisoner to the medication to keep the patient, among other factors.
I’m sorry I began chronic use of benzodiazepines, not because of what my life was like on them (and I do sympathize with people who suffered on them), but because living without them seems so unbearable. I’m one of those individuals who tolerated being on them, once dependent, but can’t seem to find peace without them.
After my horrific CD detox, my psychiatrist did reinstate me on lower doses of various benzodiazepines for nearly a year afterward. As my dose is reduced more drastically, I’m reaching for things like Benadryl or anything OTC that can help these horrific effects of anxiety. People say to exercise and meditate. Being confined to a wheelchair seems to make jumping into activity much more difficult and my mind races too much for me to meditate. In fact, I do the opposite; I’m constantly on Twitter or something that is fast-paced to constantly keep my mind stimulated on something else. If I try to do something more relaxing, like viewing a film, I have to be in the right head space or I simply can’t concentrate and slow down at all.
A neurologist took over my care because I’m supposing she’s willing to wean me off slower, plus add things to my regimen that may help me: Baclofen, Zanaflex, or even medicinal marijuana. I won’t lie, ideally, I’d find a doctor to keep me on them on doses that keep me being myself.
I will confess I withdrew from 10mg of Valium in a month’s time earlier this year. I spent nearly a month entirely off. In that phase, anxiety was still an issue, but it was mostly feeling ill and catatonic that lead me to begin retaking the Valium again. With one dose, 2.5mg, I was amazed by how normal I felt again. I was me! My psychiatrist wasn’t pleased, despite the fact that with my rapid withdrawal, I had nearly an entire bottle of Valium left, plus a refill on it. I think giving into temptation and going back was inevitable with that fact: I was confined to bed, I didn’t want to do anything. I’d spend my days trying to pass the time on Twitter just reading tweet after tweet or watching a film I’d already seen many times for comfort. I’d spend those times waiting in desperation for when it was time to sleep again because I hated being awake; I hate existing.
My ideal goal:
– Quit creating new dependents on benzodiazepines.
– Don’t be so barbaric as to force those dependent off of them because it’s so life-altering.
Thank you Janice and all the volunteers of this coalition.
I too had similar experience from
Lorazapam ( Ativan) but was so sick
with withdrawal tolerance but on just half the prescribed dose, when a therapist who did Neurofeedback said you can go off that medicine because you are doing Neurofeedback.
I did almost die those first 3 months, calling Betty Ford Clinic, where a MD said ,” You are out of the woods, there is nothing we could do but give you benadryl then phentynol..which would require further withdrawl”
I talked to all on Benzo Buddies, MDs on both coasts but Only a few understood. These few had no help however. And yes, many therapists later with lame diagnosises of PTSD, etc were eating up thousands of dollars.
Now, I am 14 months recovered, almost lost my husband and lost froends, because they did not believe it was a drug damaging chemical inbalance from the prescription. That internet seeze,”
Most people are over it in 10 days. “
So those around me, slipped away.
I have scheduled an appointment with a research doc at Stanford to hopefully get this horror more puplic.
Janice,
I am curious. How much more ativan have you got to go? When do you expect to complete the process? These drugs are horrible.
Hi Tony! I actually switched to Tranxene and have 1.18 mg left! I am hoping to be off in shorter than a year from now! They’re the worst thing that’s ever happened to me!
I just switched to Valium this week. I takes a while for our bodies to acclimate to the new benzo. I was bedridden before with so many symptoms. And hope this will ease some of the suffering. I am waking with night terrors and all the symptoms that go along with it. I pray the Tranxene will help you. .
Janice, so sorry for this living hell that you, and many of us, are enduring. At what point in the process did you switch? Tranxene isn’t one that we often hear of as a substitute but I’m interested as I can’t tolerate Valium and Klonopin is extremely potent now. Finding a knowledgeable doctor to help is extremely difficult – of course, there’s no one that can unburden us from the horrendous impacts/symptoms that we endure….but finding a tolerable medication to slowly titrate from is important. Hope for healing for you on the way down and once off!
Hi Scared! I was switched to Tranxene after a failed inpatient detox the Ativan, which is another story in and of itself. The detox was CLUELESS. I called my doctor from the detox and he switched my to a longer half life over the phone and I will always be grateful he did as they were going to send me home undetoxed with nothing.
Regarding Tranxene (Clorazepate Dipotassium). Tranxene cannot be liquid tapered, so if you’re planning on doing that, don’t get Tranxene. I have good insurance, but if I didn’t it would be extremely expensive. I dry cut it micro with a scale. I also can’t tolerate Valium or Klonopin which is why he chose it for me. It comes in 2 generics, Taro and Mylan. Mylan is VERY thick and hard to cut so I get Taro only. Most pharmacies won’t special order it. I have to hunt down a new pharmacy every year or so to get it. The doctor has to specify “Taro only” or you get Mylan. In children Tranxene’s half life is listed as 4-6 hours I think. I honestly think it’s closer to that. I dose 4 times a day and get interdose withdrawal. Looking back I would have just liquid tapered Ativan as it would have been easier.
Thanks for responding, Janice – doesn’t sound like a good solution for me, then, as I was hoping the 1/2 life was longer. I wish I could liquid taper my klonopin but I cannot tolerate it and so, you never know whether you could/could not have tolerated it with Ativan. I am having to dry cut/weigh microtaper klonopin ODT wafers which come in a smaller dosage but it’s not accurate – the tablets are not scored. But it’s the best I have at this point…..extremely symptomatic, miserable, and just trying to find a way off, to heal, so that my 7 beautiful children can have a mother again. I’m still having a hard time accepting this hell that I’ve entered into. It’s so inhumane!
You’re welcome. It is supposed to have a long half life, but it doesn’t for me and I read it has a shorter half life in children (which is weird). I think honestly there isn’t much known about Tranxene. It is definitely easier to dry cut than Klonopin would be because the lowest pill is 3.75 mg versus .25 mg. I had a non troublesome crossover, slept a lot.
Klonopin comes in a .125 mg ODT which is what I’m using but when you are in acute tolerance withdrawal, I am not sure it matters what benzo you are withdrawing from – I don’t know? Glad for you that it wasn’t a difficult cross and that you are sleeping better.
Janice
I’m glad you had a good crossover and hope that it continues so that you can slowly taper off and be done with this.
I finally made the switch to Valium this week and although not complete with my crossover and not really sure if this was the way to go I am going to stay on this course and hope I can continue to taper from Valium. I was low in my Ativan dose and it had become unbearable.
I’m so sorry for all of us going through this dark time and pray that with time we will all be better.
ScaredMother, I hope the taper from the klonipan
Will get to a tolerable point for you as well. I know how awful this hell that we have entered into is. You deserve to be with your family. Sending love and strength to all the benzo warriors.
Mel, I wish you well also in your Valium taper, that things can ease up enough so that you can continue on. “Tolerable” is a difficult word when things are so bad, eh? The bad symptoms rotate but this week, it’s the severe hyperacusis, tinnitus and ear pain that are really difficult – painful for anyone but especially difficult with 7 kids in the house.
I am currently weaning off 5 mg of valium by my Psychiatrist because I was on klonopin
for years.I am experiencing interdose withdrawal.My symptoms are stomach pain and gas.
The occurance of this is around the same time each day.I know its a small dose to deal with
but the intensity of this is almost intolerable for a a short time.I found the best way to deal
with this is too drink cold water and lay down until it subsides.So due to drug sensitivity,
even low doses can effect some patients.Also any underlying conditions should be ruled
out to really understand the the long range effects of this drug.Hopefully more awareness
is needed to combat further addiction that i hope more doctors would understand.
I was wondering if anyone else still has withdrawals after 8 months of being fully off their benzo doses? I took Ativan at around 1mg for a year and a half and did a micro taper for two months and have been fully off of Ativan for 8 months now. So much has gotten better but I still have ally of mental symptoms going on. Can anyone relate?
From my experience with major tranquilizers antipsychotics 3 years, then minor tranquilizer xanax/klonopin 2 years. sent me to hell for a year, because of cold turkey.
It took a year, and half to get back normally!
So you will be back in 1year i guess, because my case was harder with other medications, and drugs as well.
2 years you will be on point!
3 years your brain will be mastered again!
5 years is the maximum, and you will be back again, even from the highest dosage, of the strongest ones!
Speaking as a victim of many drug withdrawals. especially the tranquilizers, which erase your mind, you can build it back. Just use every natural methods, and jogging, workout, do your thing! Meditate!
Yes, I am tapering now and meditation has been a huge help. I have been on these things over 30 years. I do not think my CNS will ever be the same again. God help me!
How are you getting off? I have been on ativanfor18 years.
Hi John I’m almost 23 months completely off and bedridden in the most severe cruel unbearable pain and anxiety depression fear and looping thoughts of SI , I don’t find many who have the crippling pain I do , can we all recover from the nightmare of wd 😖😩😭 I’ve thought about reinstating my symptoms are so cruel, I can’t sit down without excruciating pain or lay down without excruciating pain, wear clothes or shower without excruciating pain and sleep is non existent as is silence, what were your symptoms, thank you
Yes I still have a very tight chest and throat tightness. Very scared. In my 9 th month Really could use a friend to talk to
Hello,
Debbie is my mom. I have watched her suffer for 9 months from detoxing from Xanax. She is mostly in bed, scared, and is hopeless towards what her future holds. Most days she feels she cannot breathe, worsens if she stands. Feels spasm sensations in her chest and throat. If anyone can talk to her…. maybe give her some hope back, it would be more than greatly appreciated. ❤️🙏
Love,
Debbies Daughter – Jamie
Hi Debbie (+ daughter). Have you checked out benzo buddies? You can fund me there : Believe2018
Wouks mive to hear from you.
I am also in my 8th month of benzo (Xanax for 15 years) withdraw with ongoing, constant throat and neck concerns.
Be well.
Hope to hear from you.
Your process is not complete yet. I believe it is not possible to cut the withdrawal time to less than a year. No matter what. Do hang in there. There should be less and less symptoms.
Rose, yes I can relate. I was given Ativan for misdiagnosed tickborne illnesses and the anxiety resulting from that. That took over two decades before it was diagnosed properly by a nurse who happen to have the same stuff. I went to a facility to get off of Ativan at 3.5 mg “slowly.” I know realize that that certainly was not slow enough. I am going through horrible withdrawal symptoms with insomnia being One of the worst. I unfortunately have to take something for sleep, but it is not helping very much and I don’t want issues from that either. I would love to hear if anyone has suggestions! Thank you.
I found a facebook page to be quite helpful for microtapering instructions and share it frequently. The link is at the bottom of this post.
Sadly even a slow taper won’t help everyone, but it’s the only tool I have to work with. I’m in my 3rd year of tapering at age 70. I projected out 5 more years before I will be finished but I can function most days quite well except that I am disabled with no help at home as I live alone.
I decided to come off in January 2016 after my 4th CT by a doctor in a new city I moved to. I was CTd by my original prescriber after one year…he was a sleep medicine specialist. My GP knew the dangers of CT so he took over writing the prescriptions…but in 2009 he was not practicing and another doctor CTd me and I nearly died as all organs were failing. A friend found me a doctor to reinstate me within 4 weeks and it took 3 months to stabilize. My new GP was out of the office a few months and his nurse CTd me…I was so ill at 4 weeks I could not take care of myself and I found a doctor who reinstated me at half the dose. I never really stabilized and eventually was prescribed my original dose of Clonazepam. It just continued like that until my trusted GP returned to practice and took over my care 100%. I have taught him how to microtaper using the ethanol method. I explained how I mix my solution to my pharmacist and he was amazed and approved, saying “that will work.” My doctor and I did not think I would ever be able to get off this medication, that it was a life sentence. I’m his only benzo patient. He knows the danger of a rapid withdrawal and let’s me go at my own pace. I have many health problems but not all are benzo related and I must go very slow in my taper, at times 1% per month…however I tapered off the first half (1 mg) in 5 months in 2016. I’m forever grateful to a woman in a facebook group who taught me the basics of microtaper. I’ve reduced my dose from 2 mg to 0.34 mg. I hold my taper 4 weeks during times I need surgeries which is about twice a year. I have developed chronic bladder inflammation, called IC or CC due to withdrawal and have had tumors removed. I do believe that is benzo related as I noticed many ppl in withdrawal groups also had the condition.
Thank you for this page and all you do. Especially the info about fluoroquinolones…it’s a real life saver. I wish all doctors were as understanding as my GP and I hope he doesn’t retire as long as I’m alive. No other doctor seems to understand the dangers of benzos & withdrawal.
https://www.facebook.com/benzotaper/
I am so sorry you were cold-turkeyed four times, that’s just awful! I’m glad you have an understanding doctor, that is truly what every one of us needs during these withdrawals. I am only 25 but almost ended my life last year when a doctor rapid tapered me then told me my symptoms were either all in my head or that I was just pretending and drug-seeking. I pray we will all get through this!
Janice I hear you!! Mine has been 40 years!
So I’m on a taper from 6.0 now at 4.0 of Xanax .im almost 60 days into it and the side effects are killing me, I go see my doctor tomorrow? I think I’m going too fast,
@David, yes you are going too fast. Google benzobuddies and join that forum. They can be of tremendous assistance. I have been on these things for nearly 30 years. Xanax is a high potency benzo. It and klonopin can be particularly hard to direct taper off dry cutting. The members at benzobuddies can help you design a taper plan to minimize the intolerable SX’s as much as possible.
Has anyone tried to liquid Titrate off titrate off Xanax
I am so scared. I have been on 2mg of klonopin for years. Not once did a doctor tell me about any of this. I don’t know what to do. I don’t think I’m strong enough to go through a withdrawal. If someone would have told me this could happen I never would have taken pill one. I only started learning about this a few weeks ago from Reddit of all places. I don’t know what to do. I am so very scared. Thank you for trying to help people… like REALLY help.
Try not to be too scared. You’re going to be ok. There are far deeper, trickier benzodiazepine hell’s than 2mg of clonazepam. Just remember: you’re going to be ok.
Tina, I spent 11 months coming off 4mg of Clonazepam. Started April 23, 2018 and last dose was March 14,2019. I used the liquid titration with milk. Worked great! Sleep is the biggest issue but I have read everything there is, I now use a CPAP machine(which was probably why I didn’t sleep and that causes panic depression) when I sleep days are very good. I liked beer and would drink a couple on The weekend….wow come Tuesday or Wednesday and it was hell so I don’t drink now…duh! You can do this, I posted about the liquid titration on Benzobuddies so go look there…others have posted as well
Good Luck , it’s not that bad but you will have tough days after 3 months I had some great days and they continue to happen even after a 20 yr Clonazepam script
Dear Elizabeth,
First of all, I am so sorry x I too, suffer from the same. I try to stay positive and take the good days when they come.I found friends fell by the wayside as usually I look fine, so they don’t understand what’s going on inside. I’ve tried to find others in my area suffering with this too for support- but nothing. It’s something I’m resigned to now and just take the good with the bad. Haven’t got any really helpful advise for you, just wanted to let you know you’re not alone x
I took Benzos nightly for 30 years. Over time, especially in the last 15 years I took them, my health began to go downhill. I felt weak, tired and had a lot of unexplainable aches and pains. I saw several neurologists and all told me I probably had fibromyalgia, maybe M.S., mabe CFS and possibly Patrkinsons. In the last 4 years on benzos, my weight dropped to 85 lbs. But the worst thing was I began falling for no reason. I would just go down. I broke a bone in my neck, and had surgery to repair this. Then I fractured my femur and blew apart a knee replacement. I was told I could lose that leg. The pain was so extreme I fainted. Luckily a good surgeon saved the leg but my recovery was very long. OI used a walker for several years and then used a cane. About a month after the surgery . on Levaquin IV and then had the only panic attack of my life. I know know that those antibiotics threw me into withdrawal. My doctors did NOT know this. Not long after that fall, I fell yet again and broke my hip.
Fast forward: my PMD finally began to think the benzos were causing my problems so he called ther psych doc who wrote my prescriptions. I was abruptly cut off from Klonapin 6 mgs, Ambien 10 mgs and two antidepressants. Within a day I began having terrible withdrawal symptoms. My withdrawal was epic and lasted FAR longer than I expected. About 4 months into it, I discovered BenzoBuddies. That was my sole support and they were extremely helpful. It was on BB that I began to understand that I DID NOT have Fibro, CFS, or any other odd disease. It was ALL caused by benzos. I was in tolerance withdrawal for years, and NONE of my physicians knew that this exists. My withdrawal went on for over 3 years and after that, I STILL had WD symptoms. I learned over time how to deal with them, thanks to what I learned on BB and other sources. I believe I am the perfect example of the severe harm that can happen if you take benzos. I am now 69 years old, and healthier than I have been in perhaps 20 years.
Your story is close to mine as far as chronic diseases and symptoms throughout years. I am on benzo medications for almost 40 years!! I was put on benzo medication at age 19 for nerve damage pain. I had no Anxiety throughout my life until months ago attempts to get off benzo medications. During taper I never stabilized Period! No Windows. All Waves. I finally got off and each day off my symptoms got worse and worse. 11 months completely off and I was in sucidal thoughts very intense and I knew I would go through with it! I had severe electrocuted symptoms throughout my entire body including my vagina, brain zapping and electric shocks throughout my entire body day and night! I have a benzo belly which looks like I’m 9 months pregnant with twins and the pressure is unbearable. My breast went up to 2- sizes and I cannot wear a bra because of sensitive breast and pushing pressure in my ribcage takes my breath away and some. I have so many symptoms it’s insane! I went to my Neurologist and flat out told her she needed to reinstate me back on Xanax immediately because I was seriously going to kill Myself because of the severity of withdrawaling symptoms. She would only give me half of the medication prior to taper and the only symptoms that subsided was Sucide mode and brain zapping along with extreme body shocks. But severe acute symptoms are still strong and my body is swollen. The Ashton Manual States If in acute withdrawals and reinstatement should be done right after taper not wait. For it may not work also many people need to go back on original dose prior to taper or higher dose to stabilize then once stabilized wait and go to a super slow taper method. Some patients are permanently damaged by benzo medications and I could possibly fall into that percentage of patients since on for 39 plus years taken Multiple times daily dose. I’m alone and scared without a willing doctor to read print out of Ashton Manual and to put me back on Xanax at the proper dose to stabilize my body and soul! All doctors are clueless and I have so many mri, labs, brain ultrasound ect all abnormal and Shows on scans abdominal distended which Gastro doctor can’t figure out why or listening to what I am saying, Endoscopy done showing slowing of of my entire Gastro System Which another I don’t know what is happening. My list goes on and on! And so does the Torturous day and night! How long can one person go on like this without anyone willing to help me and read up on benzo patients nightmares and HELL!
Gale, I want you to look into a botanical called Kratom. It is a legal tree leaf that is harvested in the far east. It is legal in the U.S. and in many countries. It has literally saved my life. It is in the coffee family of plants. It does attach to the brains opioid receptors as does coffee and mother’s milk… It is addictive much the way coffee is but not even close to the addictive qualities of benzos.
I drink 3 cups of Kratom tea per day and it makes my life bearable as I have reached tolerance levels on my Valium a long while ago. I am about to embark on a microtaper of Valium and this botanical might be the one thing that helps me get off of that hideous drug. You must research suppliers and the pharmaceutical companies are try to make it difficult to get this tea. I have found The Kratom Connection.com to be very reputable with a well screened healthy product. I use this product Green Maeng Da Kratom Powder. I take two to three teaspoons of the powder as hot tea every day and it has made my life bearable again. Try a small amount and see if it does not turn your life around. God Bless.
Robert
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I came off of xanax in Oct of 2018. Has anyone had trouble with chest and throat tightness where its hard to breath?
Debbie, I guess you could describe mine as chest tightness, although it just feels as though my bra is too tight sometimes, and I finally have to unhook it. That helps me to breath more easily.
I’ve been on up to 4mg a day at one point in 2016.
It seemed to work much better then. Been on it at usually 2-3 mg. Now on 2, but that was because of a recent 4 day stay at a psych unit. I have a VERY big fear of being alone. I also have MECFS, Fibro and Dysautonomia for almost 30 years which no psychiatrist or medical dr understands how sensitive we are to meds. I had a very bad relapse in June and have been bedbound and scared that I’m dying. Hired a lady that I cannot afford to come stay with me, fix meals etc, but I cannot afford her very long. Very isolated; one friend that I’ve had for years, now will not help me. Have had anxiety and panic disorder for years, but now it’s constant. My daughter wants me to go bk to a psych unit and I’ve tried, but it freaks me out. Have bad insomnia now..slept 45 minutes last night…Ambien seems to have stopped working or all my meds seem to be doing the opposite. Never been able to tolerate anti-depressants, cause more panic. The Klonopin I’ve been on for 9 years, before that xanax small dose, and Valium at some point. I know I’m rambling here. Very surprised I can even type this much. Since I seem to have lost the ability to care for myself. WHAT DO I DO?
This could have been written by me!
I’m 58 years old and was put on benzo medications since 19 years old for nerve pain. I recently tried to get off Xanax and the withdrawals were the bottom pit of Hell itself! I was completely tapered off and had zero windows the entire taper. I was completely off for 11 months and my withdrawals intensified every day. I had such severe electric shocks and zapping which included my entire body and most sensitive body parts. I became sucidal and so fearful of reinstatement because it was a decision of kill Myself or reinstate and live. My husband and daughter had made me reinstate due to not wanting me to kill Myself. I reinstated half the amount I had started with and it isn’t controlling everything but it has stopped the severe brain zapping and electric shocks. Doctors didn’t want to give me back the medication and do see this as drug addicts and seekers. I told my Neurologist I was gonna take my own life because of being tortured for way to long! Doctors don’t believe especially when you’re off after 11 months of still experiencing severe withdrawals! Every system is involved with me. I am totally frightened of what to do next and if my doctor will continue to write out my scripts or end it. Of course I will have zero choice but to then take my own life for NO MORE TORTURING ME! Hopefully one day Doctors will acknowledge the harm done to Unknown Patients Torture! I believe I have fell into the category of Permanently Damaged by Benzodiazepines. Almost 40 years on these Drugs!!
Thank you for sharing your story of the horrific suffering you endured and your ultimate survival. Don’t know why I’m always shocked at how young some are who have gone through this torture. I am 63, was prescribed valium 15 yrs ago for electrical surges in my body. I repeatedly ask all my docs if this drug could cause me harm long term. I was ALWAYS told no, you’re on a low dose. As you stated, it doesn’t matter the dose OR benzo. They are ALL poisonous! I have lost my life as I knew it. My family is suffering bc they wonder what happened to me. I don’t have any hope of getting off…I cannot survive life or the thought of years of withdrawals, even though I’ve been in tolerance withdrawals for years. I don’t want to live much of the time. But my hope in Jesus and my G kids draw me back to life. The thing that is so brutal is the absence of any joy and the deep depression. God bless and protect you and all of us who are suffering from this benzo disease.
Mary, have you been tested for Lyme disease and other tickborne diseases? I’m sure there are quite a few things that can cause electrical surges in the body, but that was one very prevalent symptom for me. I actually felt like I had electricity running through my whole body. Most doctors are extremely ignorant of Tickborne diseases and how to treat them, And of the multitude of symptoms that could present. They actually overlap with so many of the benzodiazepine symptoms it’s not funny. The regular Western blot is quite useless as is the Eliza test which is even more useless for tickborne diseases. I would recommend getting a test from I Gene X for not only Lyme disease, but also for Bartonella which are grandparents called cat scratch fever. To learn more about Lyme disease and coinfection’s you can Google : ILADS which is the international Lyme associated disease society, And then put in Joseph Burrascano, MD and that will take you to his protocol for Lyme disease and coinfection’s. I am not by any means saying that you have this, but since you had the electrical shocks before starting the Valium like I had electrical pulses before starting my Ativan, It is a possibility. You will have to pay for these tests out of pocket, but as I say the regular Western blot is quite useless. I would go buy Lyme literate doctors and what they say as opposed to the infectious disease society. They are far more accomplished in the field of tickborne diseases! The other lab I would highly recommend possibly more than I Gen X would be DNA Connections. I have not used this test personally, but A doc that I used who is quite well-versed in Lyme disease says that this test is superior to I GeneX. I Gen X is a very good lab though. You May have to find a doctor that does these tests, but I would call the companies to find out, if you are interested in looking into this. There are some very good docs or holistic practitioners that have used herbals and homeopathy as opposed to antibiotics. I would highly recommend this if indeed this is something you need to tackle. The only reason I mention that is because Tickborne diseases become well entrenched in all tissues and cells of the body and brain relatively quickly. The 3 to 4 weeks of doxycycline or amoxicillin is nothing but a very bad joke! I would be very happy to provide names of people who can treat you well if this happens to be something you need and/or desire. hugs and prayers!
Your a god sent you are helping so many people like me who are suffering as you are god bless all of you
I took benzos for THIRTY years. I did know they are addictive. But I did NOT know about tolerance WD. I do now. My physician forced me to go cold turkey. That should never be done, but it did to me. My physician called the prescribing psychiatrist and he would no longer give me refils.
My health on benzos had gone steadily downhill for about 12 years, which corresponds to my being put on Klonapin. I became weak, dizzy, lost so much weight I got down to 85 lbs. I hamany falls because my balance was so bad. Specialists told me I had fibromyalgia, CFS, and possible MS or Parkinsons.
I did a cold turkey. The first 4 days I was in a psych hospital, not by choice. I was told if I did not go, the doctor would have me Baker acted. Well, this place had NO clue about benzo withdrawal. NO CLUE. I was treated as a common street addict, publiclly shamed for my addiction by the Social Worker. Thank heavens that after 4 days my insurance refused to pay and the hospital promtly booted me out. In full blown withdrawal! I was hallucinating with all five sense by then and became extremely paranoid that the hospital was going to come get me. The first month was something out of a horror movie. By month 3 I had found BenzoBuddies and that is when my true education began. I slowly began to understand what was going on. I felt totally crazy and sick for about 4 years. It very slowly got better. Six years ago I sold my house and moved to a new town, still in major DP and DR. But now, 6 years later, I am healthier and happier than I have been in perhaps 20 years! ALL my old symptoms disappeared. All along, it was benzos and nothing else.
I forgave my former physician because along the way I realized that going cold turkey was my ONLY chance of getting off benzos. I was so addicted. A taper – no way could I have handled that.
I still going on BenzoBuddies, because I now just want to help other people in the same situation. I literally owe my life to that forum.
Annie
Thank you for sharing your encouraging sorry even though it was 4 years of hell for you. I’m sorry they cold turkeyed you. It’s awful what these doctors and drugs can do to you.
I followed your posts in the fb groups during and after my withdrawal from clonazepam. Please know that I and many others understand precisely where you are coming from and are very grateful you have donated your time to BIC.
Excellent article. My brother fell into the category of “cannot cope and ended his life” part of your article toward the end. I am glad that you were “lucky” and that you have helped form the BIC. Please continue to educate and send your articles. Thank you.
I am 54 and I too have been taken a benzo for 26 years now. Started with Xanax to kolonapin to Ativan the last 16 years. And my biggest fear has came by my doctor of 16 years of prescribing the Ativan decides to cut me off cold turkey untill I got enough energy to go in and tell him that he shouldn’t just stop this med just like that. I finally got through to him letting him know the horrible painful withdrawal I would go through. He was able to titrate me down from 3 mg a day to .5 mg 3 x a day for 2 months.
Now I’m out of meds and losing it . I feel like I’m dying for real.
Electric shocks on my skin and hands . Swollen eyes . Painful qlenching jaws. Sweats, no appetite headaches extreme headaches and can not tolerate noise or sun
Or any smells . My taste buds are all out of whack. No sleep. Depression and panic anxiety attacks even greater .
I can not live like this . I’ve lost my family and friends due to not functioning.
Not a good quality of life to live like this . No one understands me.
I used to work all the time and enjoy doing my hobbies but it’s gone and I’m really scared
Some one tell me what do I do? I’m begging to just feel ok again. It’s as I’m losing my mind and need hospitalization
Anyone out there please I need advice
Cbd and medical marijuana helped me with these symptoms
Marina
I hope you have managed to stabilize and continue on your healing. Please update us. I pray you are doing better.